Home hemo spouse

My husband has been on dialysis for 3+ years. He’s been dialyzing at home (hemo) for 6 months. Typically, he gets on the machine 4-5 nights per week. I work full time and he works part time w/ part time disability. I’m a special ed teacher for violent children with emotional disabilities. I’m pooped after a long day, and sometimes after making supper, I just dread the set up, even if what I’m doing only takes 10-15 min.

Holy mackerel, am I alone in this? Any other spouses experience similar situations?

If I suggest that I want a “break” for a day from doing any dialysis stuff, my husband gets offended and makes me feel guilty by saying things such as, “I wonder if I got really sick, would you help me?” or “I guess I’ll have to go back to the unit.” or “I don’t get a break from this, so why should you?” or “All I need you to do is put on my blood pressure cuff and pull the skin back (to insert button hole needles). There’s no break from that. Is that too overwhelming for you?” Or, he says that he’s very angry and that he doesn’t want any help from me ever again.

I’ve also suggested a rotating schedule, so that we aren’t always doing the same tasks. He’s not interested.

I end up feeling angry and exasparated!

Hi Heather
You really do need a break or as you say, change what you do to vary it.

Carers do it as tough as the patients and I know what it is like to do the type of job you do as I have dealt with similar children in my school. I am not the carer but my hubby is and you are right, sometimes you just don’t feel like doing it. We try to give each other nights off doing stuff, there is no routine exactly, we just seem to sense it but some nights we are both tired and irritable. Your hubby needs to realise that you have needs as well, he doesn’t sound like he very happy at present and is playing mind games if he is trying to make you feel guilty. Is there someone like a social worker nearby you can both talk to?
Over here we can book back into our training centre for some respite and friends who have experienced home dialysis have told me that this is a great thing to do when you need a break from the home dialysising thing. I have done it once already in 7 months and enjoyed doing nothing more than putting the needles in for a change, then we both had the night off.

Also going away for a day or 2 so you can both feel “normal” works wonders, we try and have some time for us regularly, even if it just going to the movies.

Hang in there, remember that what you are doing is a wonderful thing.
Cheers 8)

I can understand some of the problem helpers and caregivers face, Heather. It’s very hard to be a dialysis patient, dependent on part-time life support from a machine every other day just to continue living. Sometimes, I feel like a zombie in Night of the Living Dead. wandering the neighbourhood as the local version of the undead. We can be very demanding at times, childish and irrational at other times. Some days, we are just mad at the world (one reason why dialysis forums need to be tightly moderated!). Thankfully, not every day is like that :slight_smile:

Similarly, it must be hard to be on the receiving end of it too.

I don’t think you can really work this kind of thing out with “the patient” on your own. It would be nice if that were possible, but I think this is one for the professionals. Your husband’s dialysis program must have a social worker. They aren’t all cut from the same cloth, I know, but they are professionals, and this would be a good starting point, I think. I’ve never known a renal social worker not to want to help and not to know where to go with this kind of thing.

Did you train with your husband officially as “the helper”, or did he train on his own and you are the “unofficial” helper at home for little things like you mention: putting the BP cuff on, getting the cup of coffee, etc.? I think this makes a difference from the patient’s point of view. Personally, I think all home hemo patients should be trained in a way that they can do it alone if they have to, even if they have a helper at home. A person doesn’t need a helper to put the BP cuff on, or to do anything relating to putting in or taking out the needles. There are some little tricks you have to know about. To me, it’s a matter of pride and self-worth to know I can do this and that I’m not dependent on anybody else each treatment. Even when I have somebody there, I always make sure I have everything I could possibly need nearby.

Anyway, this isn’t about me, it’s about you and your husband. You don’t want this to become resentment that festers under the surface. I know some cases where this has ended up in divorce. I would say, take the first step and make that call to the social worker. We all aren’t alone in this.


I think what your talking about happens in almost every situation where caregiving is involved be it dialysis, or stroke or some other illness. Often the outbreaks of temper are directed toward a person when really what the patients and caregivers are most upset with is the demands of the illness.
I agree with Pierre you probably can’t work this out on your own. I haven’t talked with a social worker but I have read numerous books mostly to find ways to change my attitude and thinking so I can remain upbeat and energized in spite of it all.

Thanks to your responses, Terry gave me a week’s vacation from dialysis set up! It helps to read other perspectives. (Sigh of relief)

Wow honestly I can’t believe your attitude, When I layed in my home hospital bed after I broke my 2nd hip I couldn’t even wipe my own butt. MY wife need it for 3 months for me every day wiping crap from my butt and never complained once infact I didn’t want her to do it I’d rather hold it in. But she would make me.

Also for 12 years of our marriage she has been through my many ups and downs and when for a year and a half my Thyroid meds would cause me to have severe ups and downs she never complained once and was always there emotionally and very supportive with a smiling face.

You say it only takes you 15 minutes and your can’t handle that for your husband you love? Yet you can handle 8+ hour work days dealing with troubled children? I know it can be hard on you but remember “For better or worse”

Maybe you should head over to my site and rant about how much YOU hate dialysis even though your not on it. :roll:

P.S. I wonder how you would feel if the roles were reversed and your husband made you feel like a burden? and he told you how much he dreads helping you setup your machine!

You said “It helps to read other perspectives” well that’s my perspective. Sorry if you don’t like it.

I guess I am just as lucky as my friends say when they tell me what a great wife I have. They are right because in almost 13 years on dialysis we have NEVER had an argument about anything concerning my dialysis.

  • Epoman

Dialysis, like most chronic illnesses, is demanding and it’s common for patients and family members to become frustrated and depressed. Patients and caregivers need to be honest with each other about how they feel. A good marriage should survive open communication. I’d bet your husband feels insecure and wants assurances that you love him and that you’ll stick around. I bet you would like him to tell you how much he loves and appreciates what you do for him. Both you and he are probably under stress – perhaps for different reasons but stress should never be discounted or ignored. I bet many caregivers (and patients) would like to take a break from dialysis. Dialysis facilities are supposed to provide back-up dialysis to home patients when caregivers need a break.

Here’s an option. Since he’s working part-time and you’re working full-time, could he do the dialysis set up? Many dialysis patients do their whole dialysis from prep to tear down. This reduces the stress on the partner and makes it easier for the partner to remain in the role of a loving wife (or husband) instead a “nurse” role. A partner can help get things that the patient forgot (or a meal or drink), provide an extra pair of hands if needed, help troubleshoot a problem, call for help in case of an emergency, and provide companionship during the treatment. In my opinion, the dialysis clinic and the spouse should encourage the patient to take primary responsibility for his/her illness and treatment. Of course, this should be suggested in a loving and caring way.

Which tells me that if your wife was getting really stressed out and needed you to help her cope, and it was something you could do, you would do it. :slight_smile: Since your wife has stayed w/ you for through these 13 very difficut years, she apparently thinks you’re one terriffic guy. Any couple who survives the stresses of complicated health problems, have to be well paired, so she has to be pretty terrific too. Not every couple is as lucky and as dedicated as you two are, but all of us try to be. For some, the support and the venting on line are the extra boost which keeps them going. 8)

Which tells me that if your wife was getting really stressed out and needed you to help her cope, and it was something you could do, you would do it. :slight_smile: Since your wife has stayed w/ you for through these 13 very difficut years, she apparently thinks you’re one terriffic guy. Any couple who survives the stresses of complicated health problems, have to be well paired, so she has to be pretty terrific too. Not every couple is as lucky and as dedicated as you two are, but all of us try to be. For some, the support and the venting on line are the extra boost which keeps them going. 8)[/quote]

Yes you are correct for example my wife has a very demanding job and I help out as much as I can around the house for example I clean, do laundry, help my son with his homework, walk to pickup our son after school (in a wheelchair). And when my wife tells me she has to be at a “Situation” for her job I support her 100%. And I do all of this even after I get back from dialysis and I am tired. Do I complain to my wife she works too many hours? Nope! not ever. My wife and support each other 100% no questions asked and we do it out of love not a feeling of responsibility.

  • Epoman

thanks to my wife writing this i really had to step back and dump the pride thing and realize home dialysis is very demanding. so i think this has made me more considerate of her and dialysis i function very good for now so i have decided to make this my job not hers.shes not my nurse. so epoman if you ever decided to do home hemo i can bet you stress will raise its ugly head home hemo is nothing like going to the center the setup the cleaning testing needle placement. when i was in the center all i had to do was sit and they did all the work, not at home from beginning to end its me or her.my wife has been there from the beginning of dialysis and shes the love of my life so what she sometimes get fraustrated with dialysis so do i but it keeps me living and here with her. so to all the people at home with a spouse let them vent sometimes because we know they are very special people sticking by us. epoman home dialysis is the best thing i could do for myself i can eat cheese again and drink milk with moderation and a banana so i say this if the chance come to go home take it,no more waiting in line to be put on like cattle and no more watching friends die next to you i have been there a few times and the last thing no more hearing i could not sit in a chair and do dialysis let their kidney fail they would be there to. hey peace and keep your head up

Terry, I hope I didn’t come off to strong in my reply (remember I run ihatedialysis.com and we say what we want to say :wink: ) to you I am not trying to badmouth your wife but her post made me slightly angry. You see, yes it is hard for her but you’re the one going through it, your the one on dialysis, getting stuck with needles, watching your diet, and she said it just took 15 minutes to put you on? 15 minutes does not sound like a long time for someone your love. I’m not saying she does not love you but she should be a little more sympathetic to your situation. In fact I showed my wife your wifes post and I told her maybe it’s a bad idea to do home dialysis because you have a very demanding job and the last thing you need is to come home from a 12 hour day and have to help put me on. She said “no way, If this is what you want I will do what ever I need to do to help you, and if it makes you feel better and live longer than I think it’s a great idea, I have never ever felt like that lady in that post.” and remember I have been on dialysis for almost 13 years. Plus I am a Cancer survivor and have 2 broken hips and in a wheelchair. But I don’t want to be getting in a married couples business so I am going to back down now, I said my peace.

hey epoman no big deal i had to defind my wife honor or its on the couch( thats a joke) i did not take offense to what you said. but once again i hope you are looking into that home treatment and dont worry about the water or room. you will feel better be cool