I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: Genlando on April 03, 2012, 06:14:46 AM
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I started home HD with NxStage about a year ago. My wife went through the training with me. I've felt that things have gone fairly well with the NxStage. Thanks to this machine, I feel WAY better than I did in-clinic.
Things seemed to be going well, until I told my wife that I'd like to start travelling with the NxStage. Out of the blue, she said that she would NEVER want to go anywhere with me and that accursed machine! She said that dialysis is too difficult for her.
Now, let me stop here, and make a couple of points clear: First of all, I do 98% of everything myself: I create all the dialysate batches on the Pureflow; I do all the water testing; I maintain the inventory; and I setup the machine. Really, the only thing that she did was tape down my blood-lines and needles and help me pull them out at the end of the treatment. I took on as many tasks as I possibly could so as not to burden her down with too much.
About a month ago, I mentioned to my wife that now that things had stabilized with my treatments, maybe we could start travelling a little bit. My wife of 30 years hit me with a load of bricks. She said that she doesn't want to travel out of town with me, because doing dialysis is "too difficult." I was shocked. So much so, that I asked her to repeat herself. She said it again: she had no intentions of going anywhere with me as long as I was on dialysis. I admit that I blew up upon getting this revelation. I told her that since dialysis is "too difficult," then why bother with it at home with me? Since then, I've done all my treatments by myself.
I've repeatedly asked her if she knows how hurtful what she said has been to me, but it's obvious that she doesn't care. I've been with her through 2 miscarriages, a flubbed hysterectomy (which resulted in her being hospitalized for over a month), and 30 years of her dealing with fibromyalgia; I've always been there for her. Yet, she seems to have abandoned me after less than a year of dialysis with the NxStage. Prior to this, I've encouraged her to talk to other care-givers on this forum and the NxStage Users Group, but she's never followed through.
Oh, there's one other component of this whole situation: My wife is a Jehovah's Witness. I left the organization about 7 years ago, after being one myself for almost 30 years. She's been angry with me ever since. It's possible that she's trying to get back at me for leaving "the fold." Frankly, that would make things even worse. Regardless of what her reasoning may be, I feel that she's being petty and selfish. That's NOT the person that I thought I was marrying.
Here's what I'm wondering:
- Am I being overly sensitive on this? I've always tried to be there for her for our 30-year relationship. Yet it seems that at the ONE time that I've needed her support, she's abandoned me. I'll probably be stuck with dialysis for the rest of my life (unless by some miracle I get a transplant--but that could be YEARS). When she says that she doesn't want to do dialysis on the road, she's condemning me to be stuck at home for the rest of my life. That's unacceptable.
- If this seems as bad to some of you as it does to me, what would you do? I've asked her about seeking counseling, but she's refused (this is probably due to the Witnesses' mistrust of virtually everything doing with the field of psychology). I've tried reasoning with her for the last month, and I've gotten nowhere. And frankly, I've gotten sick and tired of the whole thing.
The only thing that I'm worried about is that if I leave her, my clinic is probably going to freak because I'd be doing dialysis on my own. They're sticklers for the rules, so they would probably take me off the NxStage if I don't find a partner. I'll be totally candid: I will NEVER go back to a dialysis center. I'll stop dialysis before I ever go back to one of those hell-holes. So what do ya'll suggest?
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You need to get to the bottom of this. It is NOT about dialysis. There are obviously other issues, and I don't think you can make any decisions without finding out what they are.
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Genlando,
I sympathize with your distressful situation.
The following suggestion is a bit peripheral to your problem:
I use NxStage also, and the clinic I'm connected to will arrange for me to get dialysis when away from home at a home Dialysis clinic in the area where I'm travelling. That way, I don't have to haul the NxStage with me, and I still stay somewhat on my regular "home" hemo schedule.
Perhaps this is something to consider/look into.
Best wishes,
---Dan
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Oh, Genlando. :cuddle;
When we were doing NxStage, there was another couple where the wife bailed on her husband and he had to go back in-center. She felt that it was just too hard on her...and they traveled quite extensively (even took the Queen Mary to England)!
I felt so bad for that guy. It must have been so hard on him. I realized that my husband's health was far too important for me to ever consider not being there for our treatments, even though there were days that it just seemed overwhelming.
Dannyboy's suggestion sounds like a good alternative. Check it out and see if your wife would go along with that. Something we did, when we didn't want to lug the machine around was for my husband to dialyze in the AM, take off afterward to a nearby locale, spend two nights and then be back to dialyze in the evening after getting home. but we took our machine on the road many, many times during our 2.5 years with it.
I hope you can get this worked out. :grouphug;
Aleta
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I am not going to beat about the bush. In my view your wife is being completely and utterly insensitive particularly as you do the treatment predominantly on your own. I am not sure how you will resolve this. One or other of you is going to have to give in on something that you are so diametrically opposed, and this is something that. Is going to eat away at the person who has given way to the other's wishes.
Were you to separate, why would you need to tell your unit? I am notsuggesting that you lie, just be economical with the truth. After all, your average dialysis unit don't really care enough to ask about your private life. I can fully understand why you would not wish to go in-center.
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I don't know if this is just about dialysis. The religion thing could be a big part. I'm so sorry this is happening. I would be really hurt by what she said if it were me. Is there a counselor type in her faith that you can start with? If not, some counseling for you to help with all the decisions you will have to make could be a good idea. I wish you the best. :grouphug;
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I hate these sorts of threads because we're passing judgment on people we've never met. I should probably refrain from saying anything, but this post made me cry, so I'm going to go against my better judgment and hope you will just ignore any of my comments that may be irrelevant or stupid.
If I were you, the first thing I would do is to sit your wife down and be gentle yet honest and give her the opportunity to explain her feelings. Spouses of people with chronic illness can suffer from the same frustrations and fears that we do, so give her a chance to be honest with you. Maybe you could take this opportunity to express your gratitude for her support through all of this and ask her what you might to do make your dialysis requirements easier for her.
I wouldn't be surprised if she responded in such a way that left you angrier and more baffled, at which point I would start planning a trip without her.
I agree with amanda100wilson in that there is no need to tell them that you will be dialyzing at home alone should you separate. If you are comfortable dialyzing without your wife around, then that's all that's important.
I'm sorry your wife is being like this. It makes me very, very angry.
It may be that religion is playing a part, but I don't accept that Jesus Christ would be very pleased with your wife's stance at the moment.
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Thanks guys, for giving me a "reality-check!" As many of you have said, there's clearly more going on than just dialysis. Also, I admit that you're only getting my side of the story. For example, I know that I've been cantankerous ever since I was diagnosed with ESRD 2 years ago. But then again, as most of you know, the life of dialysis can be like Chinese-torture on some days; and then you have the REAL bad days other times. It's hard to look through the pain and suffering and see that your spouse is suffering right along with you. I promise to acknowledge this with my wife.
Even so, I've been too hurt to let this whole matter go. Furthermore, the religious dynamic is too big an issue to ignore (at least in her mind. I'm totally of the "live and let live" mindset now. However, religion is EVERYTHING to her). Unfortunately, the combination of these two issues have destroyed any possibility of reconciliation. Right now, separation seems to be the only option. It's a damned shame, too. We were going to celebrate our 30Th anniversary on May 15Th. Unfortunately, our relationship evidently wasn't strong enough to weather my extended illness. Either I've been too bitter to receive her love, or she's been too self-centered to give me any support. Regardless of what the reason, our near-30-year relationship seems doomed.
Frankly, I don't need this shit right now!
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I'm really sorry to hear this, Genlando. You don't need to make a hasty decision, though. Have a talk with her before you decide. Your 30 year old relationship is worthy of some time to make sure you are doing the right thing. :cuddle;
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I doubt it's the fact that she's a JW which would stop her travelling with you, unless someone within the organisation is making it hard for her somehow. Is it the fibromyalgia? Does she worry that she might flare up (sorry, I'm not sure how severe the symptoms can be or how to refer to it properly) whilst you're away from home with no other support network to rely on? Does she worry that something will happen that she won't be able to cope with (you'll become ill, for example) or you'll run out of supplies or similar?
I think you need to sit down together, without getting angry, and listen to each other, both being as honest as you can be.
I hated my Blokey doing dialysis (PD) at home and was relieved when it didn't work (he knows, it's okay). The idea of being away from home tended to freak me out a little but if he'd remained on PD I would have been happy to go away gradually, taking baby steps; is that a possibility? One night away, a couple of nights away, build it up to a week. Don't go far from home to start with? Without knowing WHY she doesn't want to travel (what does she mean by 'difficult'?) it's hard to advise.
I hope that you're able to discuss this together and come to an agreement.
*huggles*
(PS: I saw that you'd already posted a reply whilst I was typing feverishly away, but thought I'd still put my two pennies worth in too! *huggles* again.)
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I doubt it's the fact that she's a JW which would stop her travelling with you, unless someone within the organisation is making it hard for her somehow. Is it the fibromyalgia? Does she worry that she might flare up (sorry, I'm not sure how severe the symptoms can be or how to refer to it properly) whilst you're away from home with no other support network to rely on? Does she worry that something will happen that she won't be able to cope with (you'll become ill, for example) or you'll run out of supplies or similar?
I think you need to sit down together, without getting angry, and listen to each other, both being as honest as you can be.
I hated my Blokey doing dialysis (PD) at home and was relieved when it didn't work (he knows, it's okay). The idea of being away from home tended to freak me out a little but if he'd remained on PD I would have been happy to go away gradually, taking baby steps; is that a possibility? One night away, a couple of nights away, build it up to a week. Don't go far from home to start with? Without knowing WHY she doesn't want to travel (what does she mean by 'difficult'?) it's hard to advise.
Thanks for giving me a woman's perspective on what might be happening, Poppylicious. I never thought that my wife would be terrified of having something go wrong while we're away. I was a network engineer before I got sick, so I've spent most of my adult life dealing with "technical difficulties." And then, after a year of watching the incompetent clowns stumble around in-center, a glitch during dialysis is nothing more than an interesting diversion to me. I forget that my wife doesn't view such things as an "adventure." To her, situations like this are a crisis. I'll discuss this with her. This may not totally solve all the issues, but it might make things a little better.
I'll update with any new developments.
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This is a very tough response for me to write.
It is not a Jehovah's Witness thing, I can adamantly say that - first hand.
I love to travel, and Greg and I do as much as we can, but it is EXTREMELY STRESSFUL for me. I enjoy it enough that it's worth it, but for someone who it's not that important to, I can see it could seem overwhelming. Perhaps in your case, you're well enough to take on the transportation issues and such. My husband doesn't and so making sure all our stuff and he gets to where we're going can be a lot of work and worry
However, and as has been previously mentioned it's tough talking about such personal things when we really don't know you at all. But would she be willing to get some counselling or mediation with you as a couple outside her congregation? It truly sounds like this is not completely her unhappy with travelling on dialysis, it goes deeper than that.
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Genlando-I'm sorry you're having to deal with this when you're dealing with ESRD!! I know that this is my worst fear with my husband. He has his own issues we deal with and sometimes mine, too, can be overwhelming. I really can't offer anymore suggestions that haven't already been expressed. I just wish you the best no matter what happens! You'll always have friends here to talk to!
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I must admit that I agree with Poppy. I had an horrendous week when my husband took ill in Greece. He was on PD and ended up in hospital the day after we got there and was admitted to hospital when we got back, he was ill for a long while. I will not go through that again, I have nightmares about it still. Perhaps your wife is really scared, I think you should have a good talk about it. It is not easy being a carer, I find we worry all the time.
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I, too, thought right away that she might be scared. I've shied away from things thinking that they were too dangerous or frightening, and have overreacted at times because of fear or exhaustion. It sounds, too, like she is used to being the patient and not the caretaker, and she may be worried about her ability to fill that role. It changes your roles in your relationship somewhat, though you've obviously tried to mitigate things by doing so much yourself. I would do the same as you. My husband really freaks out sometimes, he is not used to medical stuff, and when he got tested the other day to donate to me (blood typing) the was freaked out and called me to distract him form the tiny butterfly needle, lol.
she may also feel resentful, then feels like a jerk for feeling resentful, then gets crankier and weirder as a result.
and she may still be hurt that you left the MWa, or might just feel life would be easier if you believed the same stuff, I don't known. She may also have mixed feelings about transplants or something, I don't know, I'm sure it's more than the machine, but it's totally possible and likely that the machine scares her. I'm Pre-D, and the machine scares me a lot. I had a PICC line, and that freaked me out, to have my husband infusing things, hanging bags. I felt like an expert needed to be there. She may just be really out of her comfort zone.
Would it help to talk to a counselor or religious leader from her church? If that is ok with you, maybe you two could have a bit of a marriage intervention? She might feel better getting things out with a trusted mediator present..
and, if it IS just a fear of having a disastrous medical problem, set things up for such an emergency: find a local center and physician, go through scenarios with her and explain how things work and how to fix some common problems. Use layman's terms and reassure her when words like "clot" come out of your mouth. Assure her that you are being careful and know what to do, and that SHE knows what to do, too. and that if something happens beyond your ability to fix it, there's help nearby.
These things would make me feel better..though I would still expect the worst, that's how I am.
It didn't sound to me like your marriage is over, but it does sound like you have things to talk about, and you're both stressed out.
I hope that you two can get back to a place of better communication and be happy together. Good Luck!
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With some caveats:
I'm a caregiver for a patient who, due to neuropathy and poor vision can do none of his dialysis set up or care. And as others have stated, I don't know you, or her, but the immediate thought I had, based on my own experiences is, 'She's afraid'.
My husband and I love to travel, but as the person responsible for it all, it's VERY hectic, scary, and worrisome for me. I've spent a week at his side in an ICU 4 hours from home. I'm the one who worries about the vast amount of supplies we need to travel with, do all the managing of things, and stressing over things. It's NOT because my husband isn't pulling his weight, it's because the state of his health requires me to pull more right now. :)
All of the above being said, realize that for me, when they told me my husbands kidneys had failed, I didn't cry or panic. Not even when he told me 'We need to talk about what to do if I die'. I just asked the doctor 'Alright. What do we need to do?' and that's what we did. When we started PD at home, it was just a challenge, but it was the ability to take control of his health and our lives. Same for home hemo. I don't rattle easily with medical things. So if she does, imagine how much scarier it may be?
I do, however, think that the religion thing is probably swimming around in the mess as well. Differing viewpoints there can muck up almost every other aspect of life.
Good luck to you, and to her as well...
Jen
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Im going to go with what Moose Mom said at first, and not make judgement on some one I don't know. But Iam like Bevy & Jen in that I am the wife of one who depends on me completely for almost everything!
It is indeed very stressful and at times exhausting, but as time goes by, we learned to cope pretty well with it. Like you, we do NxStage at home. I look forward to traveling with it. Don't mind doing the planning and gathering of all to make the trip special! That being said, 7 years ago when he was diagnose and I knew nothing about ESRD, it was very scary and worrisome for me. I said some things to my husband, that Iam not proud of, but being the man that he is, he understood! He is so humbling at times and has a way with me, that makes me reflect on my actions!
Do I love him? You bet your sweet snookums I DO! We have always been around each other ever since we married! God put us together because we are GOOD FOR EACH OTHER! He loves my spirited conversations and I love his calmness! We put the true meaning of "Opposites Attract!"
He knows when I get upset, to just let me blow, and get it off my chest and then Im okay! Now I don't go off very often and actually, havent gotten upset in a long while. I have learned that at times, I can be hurtful, and not meaning anything by it, but it does hurt. I see that he is affected by my words or actions, and have really done much better in watching what I say! We have actually gotten closer the past couple years since doing NxStage at home. And We are always together!
Its just this illness puts so much on everyone envolved! It changes lifestyles! And with changes, we have to adjust.
I think if you were to talk to her heart to heart and find out where you both are at, then if you can reconcile then by all means, do it. But if not, then be gracious enough to let her go! If she truly loves you, she will come back!
Absences, can make the heart grow fonder! If it is meant to be then it is meant to be. So sorry you have to go through this, especially, when you do so much of your own care!
God Bless,
lmunchkin
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I've been reading this and I'm wondering why YOU have to leave. You are the one who is ill. Yes, you can do it by yourself and she can hit the road. Maybe someone in her church will take her in and you will be the BUM then.
I do hope you can talk things out first. :P
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Thanks for so much encouragement and advice everyone! Per your suggestions, I sat down and talked to my wife last night. The conversation was quite amiable--unlike the last several times that we've spoken over the last month or so. I told her that I felt as though she was rejecting me. She also voiced her concerns about doing HD on the road. All in all, it was a good conversation.
We covered a lot of ground. However, the primary issue is unresolved: I want to travel, and she doesn't. But at least we're talking again.
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Glad you two are talking! It sounds like things are less strained between you two... if you still wanted to talk more about other things that are going on... Would she be willing to talk with a mediator, or a social worker instead of a therapist or psychologist/psychiatrist? I've worked in the mental health field for nearly 8 years, and in my experience, when someone is put off by speaking with a therapist, or psychologist...hearing the words, "social worker", or Counselor takes the psych. out of psychology...know what I mean? a social worker, or mediator, or simply a life coach or something along those lines, often aides in them opening up...maybe ask a nurse to assist you? Have her talk with your wife about the benefits of traveling and how you can take more precautions during the time you are away?
I hope things continue to work out for you! :cuddle;
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Genlando, your situation is tearing at my heart indeed! The complexity of having D as part of ones life, trying to maintain a normal life, and then having relationship breakdowns such a the one you are having (after some thirty years of being together) must be utterly devastating. I would not like to try to make any kind of judgement - like some other posts have indicated, that would not be fair.
I would like to say that I do not believe you are being oversensitive; irrespective of the WHY factors, what you are experiencing with her attitude to D and your illness, must be enormously hurtful. Ultimately, D is part of our lives, and much as we hate that, it does play a role in terms of who we are and how we live - she needs to understand that - it is not possible to reject D and not be rejecting you in the process!
I take the point of the other posts that perhaps she is scared, but then who of us are not. It would be tragic if fear stopped us from the simple pleasure sin life, like travelling and loving and being.
I truly hope and pray that in the process of talking with her, she gains some insight and clarity into where you are at, as well as into the effects her comments have on you.
I will be thinking of you so much
P
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I hope this is the beginning of resolving the travel issue as well, Genlando. I really do. I think it's important to the mental health of the patient to try to maintain as normal a process as possible. It's why, although my husband is far more of a traveler than I am, and he's mostly unable to help with the 'stuff' of travel, that we still DO travel. CKD makes you realize life happens too fast to stop doing all those things.
When we were on the PD Cycler, we went all over the place. Sometimes the cycler went, sometimes just bags. We flew to Vegas, cruised, spent time in South Carolina on the beach, went to NYC with our kids, and made multiple short trips to various cities around us. It does help you to feel your life is more normal. But for the caregiver, it can be scary.
Because my husband cannot really 'prepare' physically, his job has become mental preparation. He walks through the supplies we need, he searches out hotels, etc. The nice part is, we feel like a team when we successfully arrive at our destination with all our supplies in hand.
I really don't know how to help you make her understand how important maintaining normal things in life can be. I wish I did. I think you've said she's unwilling to reach out here to other caregivers, but if she ever does, I'm happy to share a phone number. :) It may also help her to read stuff from other patients. Often, when we are married we think our spouse is 'the only one' who acts this way, does these things, says these things, and reading other patients who've been in the same situations you are might help too. Hell, print off some posts and hand them to her.
CKD and big D doesn't HAVE to end your 'real' life. It just has to be incorporated into it. I hope, in this case, that it doesn't end your marriage. But please, make sure you protect your dignity and sense of self through this. Feeling less than because of D is unfair, and plain wrong. You can no more change it than you can change the color of your skin.
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Would it make her feel better if you traveled and scheduled your dialysis for in center? Just because your on home hemo doesn't mean you can't schedule in center during travel. You won't even have to think of packing supplies.
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There isno reason at all to prevent those of us on NxStage from enjoying a vacation. I have been on NxStage since theend of October 2011 and we are already enjoying our first vacation away from home. Are you people that stay in hotels? The reason I ask is do you think that your wife is embarassed that someone will see the machine? A silly thought, I know, but the reasons behind many thing in life, are often trivial.
Other than physically fitting the dialysis around our plans, it has been very unproblematic so far.
Another thong that springsto mind. Do you dialyse in vicinityof your wife? If you don'tmaybe there is a denial processgoing on, and going on vacation she won't be able to do thatand dialysis will be staring her in theface?
Maybe a trip away by car for a weekend could be a starting point?
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I'm really glad you're talking again. Keep the communication open. Maybe eventually she'll be able to put her reservations into words. Sometimes it takes time to express your fears and she needs time. Keep talking (and don't forget to throw in a compliment now and then).
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I can only speak for me, but I was utterly terrified at the thought of traveling with NxStage. We managed to avoid it for months, but there came a time when it simply had to be done. I was a complete wreck, even though by then we were old pros.
But I sucked it up, and we did it. I was literally shaking hooking him up. (He kinda laughed at me.) The next night...well, it wasn't quite so bad. We've had five or six trips since then and now really the thing I am most apprehensive of is moving the damn machine. We're small, and it's heavy.
Someone mentioned embarrassment, and I admit that I am a little embarrassed. I generally just put the "Do not disturb" sign on the door so the maids won't come and if there's anything I need for towels or toiletries, I ask the front desk. I take the trash and boxes out myself.
Another problem I had is that we only travel on business. I like to do a bit of sightseeing when I'm doing business travel. But when we were doing short daily, a dialysis day meant getting up in the morning, going to work, rushing back to the hotel, setting up the machine, running out to get groceries or takeout, then rushing back to the room to get hooked up. When the treatment was done, sleep immediately. Now that we're doing "extended at night", we don't have to hook up until bedtime and so have our evenings free.
I do have a suggestion. No idea if this will help. But ask if she'd be willing to try a fakeation. Choose a different room in the house to do dialysis. Pack your supplies, dialysate, and the machine. Put everything in the car. Then say "Ok, we're leaving." Maybe drive around the block. Then come back to the house, and carry the luggage into the other room as if it were a hotel room. Make a rule that you don't leave the room unless something goes wrong. Do the whole treatment without leaving the room.
I think this would have helped me a lot, but I didn't think of it then. :) Yes, it's a lot of trouble. But it will help her realize that it can be done, I think.
One other thing I do to reassure myself is to look up the closest home dialysis center to our destination - just so I know there's a place we can go if we need supplies or help.
Hope this helps.
- rocker
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Moosemom-You give the best advice!
Genlando-I'm so glad that you finally sat down and talked to your wife. Hopefully, a few more of those open and understanding conversations will send you in the right direction. When you are in the moment, I know it feels overwhelming, like you can't take it another day. I'm glad that you hung in there.
Keep us posted!