I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: emma67834 on March 20, 2011, 09:08:24 PM
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My husband has been doing in center hemo since September 10. He now wants to do Home Hemo. I am nervous about him doing this. I work full time and have 3 children 2 dogs and a cat in the house. He has several other health issues such as being diabetic, high blood pressure, high cholesterol, gastroparesis, fecal incontinence and neuropathy. I am overwhelmed with what all his health issues are as it is without having to be his nurse at home. At least when he is in center I get a break. He is constantly in a bad mood and argues with the kids over the smallest things. I feel as if I am losing my mind. I feel bad because when he told me he wanted to do in home, I was not enthusiastic at all. It took him years to manage his diabetes right. It worries me that he will not continue this.
There are many days where I would just like to take my kids and leave because they are so unhappy at home with him. It is really that bad and I don't forsee it getting any better. I feel like I am a bad spouse for thinking the way I do. I just know that my oldest daughter (13) feels like her dad hates her and she is really wanting to move into her grandparent's house to get away from the insanity this disease has caused in our life. Any suggestions out there on how I can reclaim some normalness in our life and ideas about doing the home hemo?
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In very general terms, people are in better health when they do dialysis at home simply because they get more dialysis. It would be great if we could get more dialysis in clinic, but the dialysis companies don't want to spend the money on extra staff, etc. So that's why people in clinic get only "adequate" dialysis.
If your husband got more dialysis, some of his other health issues might recede and he would be a lot easier to be around. Dialysis can put anyone in a bad mood.
We have members here on IHD who do home hemo without help from a spouse. I would suggest you contact his clinic and try to get an idea of how much he will be able to do by himself. You don't need more burdens; you have enough on your plate. It's entirely possible that you won't have to do much for him.
One other thing I might suggest...see if his clinic offers inclinic nocturnal dialysis. He would still be in a clinic, but he'd get better dialysis. It's hard to find a clinic that offers this, again because dialysis companies don't want to spend the money to make anything convenient for patients.
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Thank you for replying. The center he goes to does not offer the nocturnal dialysis. As far as the home Hemo he is wanting to hook up after I get off work around 6 pm to 7 pm every night. That doesn't leave me any time for a lot of sleep on those nights as I usually get up at 4 am everyday.
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I am planning to do home hemo once I start dialysis because all of the research shows that it is easier on the body as it more closely mimics what normal kidneys do. But I also plan to do it all myself, and not everyone can do that. Dialysis and kidney disease affects the entire family, and if things are difficult at home for whatever reason, bringing dialysis home could prove to be very difficult indeed. You would be doing no one any favours if you just go along with it and don't address your own issues. Lack of support from family is the main reason for failure when dialysis "comes home." Home hemo can make a strong relationship stronger, but it can make a problematic home situation even harder to live with.
Is there a social worker at the clinic that you can speak to?
There is a website for NxStage users (which is a machine used by home hemo dialyzors) www.nxstageusers.com where maybe you could ask some more questions. Here on IHD, we have a NxStage forum and also a Caregivers' forum.
I know this all must be so difficult. I'm glad you've come to IHD, though.
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I would doubt with all his other problems he would be considered fit for home hemo. I would expect they would look to see if he was capable ? and not just give you the task of becoming his dialysis nurse ! I thought the whole idea of home hemo was that you provided back up in case of emergencies but didnt actually become his nurse.
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Sounds like if he wants to hook up after you get home from work a lot of the pressure is going to be put on you. I agree with Kickstart and doubt if he would even be considered for home dialysis with all the other problems. Is there a social worker you can talk to about you concerns. For the most part if you are doing home dialysis you ned to be capable of doing most of it yourself. Hubby's been doing home hemo for over 4 years but he has been doing most of it himself with me just putting needles in for him and I set up the machine while he gets other things ready. I would really talk to a social worker about my concerns.
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The thing that is so frustrating about this topic is that the sicker you are (especially if you have heart issues), the WORSE inclinic 3xweek dialysis is for you. The sicker you are, the MORE GENTLE dialysis you need, but these are the very people who don't get access to it because it seems to be available only at home. Ask any nephrologist what kind of dialysis s/he would want for him/herself, and I can pretty much guarantee you that inclinic HD 3xweek is NOT what they would choose.
So, what happens is that "healthy" patients get to have better dialysis.
That's just not right.
Why can't people in clinics get better dialysis?
At first glance, I don't think his other health issues would keep him from being able to do home hemo unless his diabetes has affected his eyesight or his neuropathy has affected his hands...he'd have problems self-cannulating. But if you find that he is expecting you to be his full-time, unpaid nurse, then THAT's the problem.
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As much as home hemo might work for him, it sounds like it would be simply way too much for you and you are important in all this too. I agree about trying to talk with a social worker and please try to get rid of those thoughts of being a "bad spouse". That's "guilt" talking to you and it's not helpful. I'm sorry that you and all your family are going through this and even though it's your husband with the illness you are each being very badly affected.
I don't think home hemo would be the best thing in the situation you describe...it would turn your home into a hospital.
PS. I'm the patient and did home hemo very successfully for some time.
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The question would be how much would your husband be able to manage as far as his own care with all of your duties. I know many that essentially dialyze by themself. One way to approach this is to see if your husband could manage self care incenter including self cannulation which is the biggest hurdle for most of us. Those needles are big and not fun.
If he can manage self care in-center, that would be a big step in getting to be able to do his own treatments at home independent of your schedule. He might actually feel better. Dialysis is not a fun part of life especially in-center the way it is practiced in most places in America. If that is not an option, then in-center nocturnal has much better results than standard in-center. Depression is improved in the more frequent and longer duration dialysis studies.
Sounds like all of you have your hands full. Hang in there, I am sure your husband does need you and counts on you. Unfortunately, being grumpy seems to be part of this dialysis routine for many of us.
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As one spouse to another I feel for you. I want to faint (and I'm not exaggerating) every time I think of having to help in any way. My husband does PD and I'm soooo worried for the day he might need home hemo b/c I don't think I have the guts for helping. Thoughts to you.
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As one spouse to another I feel for you. I want to faint (and I'm not exaggerating) every time I think of having to help in any way. My husband does PD and I'm soooo worried for the day he might need home hemo b/c I don't think I have the guts for helping. Thoughts to you.
If he does PD, that probably means he doesn't have the "guts" for home hemo. So, what happens if PD fails him? He will have to face up to his fear. He won't get a choice.
I've been thinking about this thread for a long time. I've also been thinking about boswife's story about a patient who did home hemo because it made him feel better (which is the very reason for doing home hemo). Apparently his daugher and grandchild live with him and his wife, and the daughter and grandchild became so distressed about him dialyzing at home that he felt obliged to go back in center.
So, we have a patient who was completely self-sufficient, dialyzed in the comfort of his own home, chose an optimal treatment for himself yet was forced out of his house and back to an inferior treatment just because his daughter and grandchild became "distressed"? I find that to be outrageous.
I understand that making the decision to take dialysis home should involve the entire family, ESPECIALLY if spousal help is required. The important thing is to ascertain from the very beginning how much is expected of the care partner. But we are talking about life and death, about health and disability. A person's life must surely count for more than another's discomfort. If my husband told me that he wanted me to be in clinic because he couldn't "handle it", I'd be devastated. I'd be the one with knitting needles in my arms, risking my life everytime I had to be hooked up to some damned machine, not him.
I'm not trying to make anyone feel guilty here, but try imagining YOU being the one on dialysis and YOU being the one told that you and your failed kidneys are just too inconvenient and distressing for you to be able to stay in your own home.
I would strongly suggest some sort of counselling. I could very well be wrong, but this sounds more like a fundamental problem in the relationship. I saw no words about "love" or "support" or the desire to do what it takes to keep a spouse alive, healthy and happy.
I hope that you are able to resolve this problem because it is a common one. A chronic illness will more quickly destroy a fundamentally weak relationship faster than anything else.
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If he does PD he probably doesnt have the "guts" to do Hemo?? Come on MM what are you thinking and saying? I do PD for many reasons being afraid of needles not being one of them? I weighed many options and choose the one THAT FIT ME as a fulltime working person.
Emma before you stress yourself out to bad about your Husband doing Nxstage or Home Hemo take a breath.
Long before he is able to do it at home he will have to LEARN 100% over and over how to do it during training. Training takes several weeks. He and you will learn during his training if he will be able to do this ALONE or with little help at home. And if he isnt up to the task they wont let him do it at home. And you also have a say in all this with the nurses and his neph. Maybe he will be able to do it with ease???? and all the worry is for not. Or maybe he will find out he is better off staying in clinic?
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I was speaking figuratively, paul.karen. As far as I'm concerned, doing any kind of dialysis takes guts. It's bloody hard work. PD is a great choice for many people and for many reasons, but to be fair, one of the big reasons that a lot of people do PD is because there isn't the whole issue of cannulation and needles. And that is a PERFECTLY valid reason!! It may not be YOUR reason, but it IS a big reason for a lot of people who choose PD. And there's nothing at all wrong with that! My neph actually recommended PD to be my first choice, but since that particular conversation, I've had a couple of abdominal surgeries and am no longer a candidate.
And paul.karen is absolutely right when he says that if hubby is trained in home hemo, he won't be allowed to go home with it unless and until the staff is satisfied that he is capable. If they see that he does not have the support he needs at home, particularly if that support is in terms of setting up the machine, cannulation, etc, then he won't be a candidate. If he will be able to do it all himself, then there is no real reason to refuse him. But if puts too much of a burden on you or if you physically cannot manage it, then he will have to stay in clinic.
No decision has to be made at this very moment. PK is very good at reminding people to just stop and BREATHE! :clap;
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Many thanks to all for your replies. I do love and support my husband in all of this. Most people have a good family support syatem when the spouse has other obligations. We however do not. His family has it ALL on my shoulders. As far as his health problems, he also has 3rd nerve palsy in one of his eyes. He also suffers from low blood sugar from time to time. His blood pressure is read sitting, standing or lying down. It's either way too high or way too low. It took him 15 years to take care of his diabetes the way he should and doing dialysis he does not have 15 years to mess around with I'll do treatments today and another one 4 days from now if he just happens to forget. I also don't want to have to be the one that he fights with on the days he does not want to do it.
If he is accepted, he will have to travel 150 mile 3 times a week one way to train. Gas prices the way they are, that will get expensive. His in center treatment now is only 27 miles away. I have lots of hesitation on this physical and monetary.
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Emma, it's easy to see why you would be so hesitant for him to dialyze at home. That you all have no support from his family is shameful. I'm so sorry to hear that; it makes a tough situation that much harder. This is something you and he should decide together. I know you will both think long and hard about all of the pros and cons and will eventually come to a decision that will work for you both. You have our support. If there is anything we can do for you from our collective keyboards, please do not hesitate to ask! :cuddle;
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MM, I really am going to just choose not to respond too much to what you said. You have NO IDEA the amount of hell this has been on me, my relationship. If I didn't love my husband trust me I would not have survived. It's ok with me that I cannot handle the needles aspect. I have BRAVELY and PROUDLY handled a LOT of emergencies these past few years, on top of having to nearly be a single parent, and I will hold my head high regardless. I was just put an opinion out there, and an admission that I already feel like crap about. So thanks.
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MM, I really am going to just choose not to respond too much to what you said. You have NO IDEA the amount of hell this has been on me, my relationship. If I didn't love my husband trust me I would not have survived. It's ok with me that I cannot handle the needles aspect. I have BRAVELY and PROUDLY handled a LOT of emergencies these past few years, on top of having to nearly be a single parent, and I will hold my head high regardless. I was just put an opinion out there, and an admission that I already feel like crap about. So thanks.
I would send you a PM to apologize, but that's cowardly, and I'd rather do it in public for all to see. You are absolutely right...I have no idea. The only "idea" I have is from what I read on here, and it has been very instructive. Most spouses are like you...they do absolutely everything thing they can to support their ill spouse, but they just can't do EVERYTHING and shouldn't be expected to. And I recognize that life doesn't stop for ESRD. There is a lot more to dialysis than just the needles. When you said that you didn't think you had "the guts for helping", I took that to mean something far more encompassing than what you've just described. I posted without knowing more about your situation, and in a community that seeks to support its members, that's unforgiveable. You have every reason to be proud of your courage, and don't ever let anyone who has never even met you (ie, me) make you feel less than the loving and caring wife that you are.
I'll tell you something...my husband wants to be part of a paired donation arrangement so that I can get a living donor; his is ABO incompatible. But he has to lose a fair amount of weight first. He just can't do it. He is just not wired that way. He wants to, but he can't. If he could, it would change our lives, but he is afraid. And that's OK. Just as you feel that there is a certain kind of help that you are unable to give, he feels the same way, and I know he feels bad about it (we don't talk about it, but I know). So, I do have some idea of what you are feeling, and I would hope that you'd have some compassion for yourself and concentrate more on what you DO do than on what you think you cannot do. First of all, I've seen MANY people who are convinced they will never be able to do something (like, maybe, self-cannulate), but then, to their vast surprise, learn to do what they most feared. So there IS hope for you! LOL. But even if this isn't the case, I KNOW you do so much more because you've just told me so. Yes, it is MORE than OK that you "can't handle" the needle aspect because you CAN handle so much more, and I hope you will be extremely PROUD of that.
So again, I am truly sorry for not understanding more about your situation and for speaking out of ignorance. I am very glad you've set me straight. I hope you will post more often so that maybe we can help you feel less "like crap" because you do NOT deserve to feel that way. Thank you for giving me the chance to apologize.
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Thank you MM. I really appreciate the apology. It's such a supportive place here that I was a bit floored.
I'm sure a lot of people get over the needle thing. I have very rare blood (AB+/CMV negative) and give b/c my blood goes to AIDS patients, burn victims and babies (I've seen it tagged every time) but it is so hard for me - I see spots from even seeing the needle and feel faint thinking about it. I feel such awe for all of you being able to deal with that daily.
I was really just responding as a spouse (and more thinking of it as a spousal discussion) so that is where I was coming from. I also was flinching at her having three kids, b/c that is more than I could ever handle, even of itself (I really don't rock as a parent). I was pregnant when this happened (renal failure), and I've had to do things like breastfeed a screaming newborn while calling 911 b/c he was passed out in the floor. I won't beat around the bush, it ROYALLY sucks for both of us.
B/c of the (high risk) pregnancy and stress, when he went on PD I did not go to training with him and he doesn't really require me to help with dialysis. But let me rephrase that I do help - I haul all of the trash, empty the bags, keep the baby away and change all poop diapers now b/c of infections. I help by coaxing him to do that last exchange when he'd rather go to bed. I do all daycare pickups/dropoffs etc b/c he just can't go there and not become crazy ill. I deal with lots of hospitalizations every year (pick your related illness!) and am a single parent and caregiver for sometimes months on end. I have a full time job also.
I don't know a patient perspective at all so I can only speak to what I know, that's all I was trying to do. And yes, we may have to face the hemo decision and I may change my feelings, or get a RX :2thumbsup; so I can deal with that, but thank heavens it is not like that right now.
The other issue with hemo is a very personal one for him. My husband's dad died of cancer when he was a teen, and the clinics, the needles, all of it, well it puts him in a bad place emotionally. I don't think it would be good for him mentally to relive all of that while also fighting for his own life. I am SO grateful that PD has been an option and like I said, super fearful of that ending. For both of us.
As for your husband, well I understand that too. We took the decision for me to donate off of the table for now, b/c we have such a little kid. I hate going to these new drs and having them say "you don't have ANYONE who is willing to donate for you?" Jeeez. I hate that. I want to look at them and say "Do you really think we'd effing be here if we had a donor??"
Anyways, thanks and I appreciate the feedback.
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Oh my goodness...you really are a hero, Lostwife. Feeling the way you do about needles and yet you regularly give blood!! How spectacular is that! I was a regular blood donor for many years, but once I was diagnosed and then had to start taking bp meds, I wasn't allowed to give blood anymore. I was so upset, I can't tell you. All I wanted to do was help some people, and then to find out that this stupid disease wouldn't even let me do that...it makes me cry to remember this. So I just wanted to say that I am so grateful that you swallow your fears and do this wonderful thing. I so envy you...I can hardly find the words.
It must be hard to make the decision not to donate to your husband, but there are other priorities at the moment, and I think you've made the right decision. I'm glad you talked about it because my yearly re-evaluation is coming up (my first), and my husband will be with me, and I suspect that the subject of him donating will come up (although I will NOT be the one bringing that up). Can I ask for your advice? I want to spare my husband's feelings. Now that you've explained it to me, it does occur to me that he might feel bad if they hint "Why can't you lose the weight to help your own wife?" I'm sure they wouldn't be that graceless, but you never know, and I really don't want my husband to be hurt. Do you think it would help if maybe I emailed my coordinator before the evaluation and asked her not to say anything in this regard?
PS: I just wanted to add that I'm glad that you recognize that you DO help. Thanks for mentioning all the things you do because those things still have to get done, dialysis or not. And that's something I try to remind my husband about. I know he feels bad about the whole donation thing, so I tell him that there are so many things that he DOES do to help out...that there so many ways to show support. With some luck, I may get to have a kidney from someone else, but only HE can give me the love of my husband, just like there are only things that YOU can do for your hubby.
Is there anything we can do from cyberspace to help you out?
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YES YES - email them or call and tell them not to ask that at all. It is an extremely uncomfortable situation for me each time it comes up and I feel such remorse. But we made this decision together and for now we are sticking to it.
They are sometimes graceless. "don't you have ANYONE?" I think the entire community needs weekly sensitivity training! We also had a meeting with one recently who gave us disappointing news and said "I feel like you are sad, you should go to lunch and cheer up!!" really? argh. get a clue!
The giving blood thing became easier when I knew where it was going -- but it's still a bit difficult. Recently they told me I have track marks - I don't know if that means I should slow it down? I thought it was odd.
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Thank you MM. I really appreciate the apology. It's such a supportive place here that I was a bit floored.
I'm sure a lot of people get over the needle thing. I have very rare blood (AB+/CMV negative) and give b/c my blood goes to AIDS patients, burn victims and babies (I've seen it tagged every time) but it is so hard for me - I see spots from even seeing the needle and feel faint thinking about it. I feel such awe for all of you being able to deal with that daily.
I was really just responding as a spouse (and more thinking of it as a spousal discussion) so that is where I was coming from. I also was flinching at her having three kids, b/c that is more than I could ever handle, even of itself (I really don't rock as a parent). I was pregnant when this happened (renal failure), and I've had to do things like breastfeed a screaming newborn while calling 911 b/c he was passed out in the floor. I won't beat around the bush, it ROYALLY sucks for both of us.
B/c of the (high risk) pregnancy and stress, when he went on PD I did not go to training with him and he doesn't really require me to help with dialysis. But let me rephrase that I do help - I haul all of the trash, empty the bags, keep the baby away and change all poop diapers now b/c of infections. I help by coaxing him to do that last exchange when he'd rather go to bed. I do all daycare pickups/dropoffs etc b/c he just can't go there and not become crazy ill. I deal with lots of hospitalizations every year (pick your related illness!) and am a single parent and caregiver for sometimes months on end. I have a full time job also.
I don't know a patient perspective at all so I can only speak to what I know, that's all I was trying to do. And yes, we may have to face the hemo decision and I may change my feelings, or get a RX :2thumbsup; so I can deal with that, but thank heavens it is not like that right now.
The other issue with hemo is a very personal one for him. My husband's dad died of cancer when he was a teen, and the clinics, the needles, all of it, well it puts him in a bad place emotionally. I don't think it would be good for him mentally to relive all of that while also fighting for his own life. I am SO grateful that PD has been an option and like I said, super fearful of that ending. For both of us.
As for your husband, well I understand that too. We took the decision for me to donate off of the table for now, b/c we have such a little kid. I hate going to these new drs and having them say "you don't have ANYONE who is willing to donate for you?" Jeeez. I hate that. I want to look at them and say "Do you really think we'd effing be here if we had a donor??"
Anyways, thanks and I appreciate the feedback.
WOW you are a hero in my eyes!!!, stay tough. :cuddle; ((((HUGS))))