Husbands and wives

[MooseMom]

I read a lot of posts here from women who do so much for their husbands who have esrd.  What do married women do who are the ones who have ESRD?  I just can't imagine my husband doing all the things that wives do for their sick husbands.  And that is not to say that my husband is not supportive and loving, but, well, he's a MAN.  Is this sexist?  Or do we as a society just expect more from women than we do from men in this regard?  Are there any men on IHD who have wives, say, on NxStage at home and who cannulate her, set up everything, etc?  I'd really love to know.

[cattlekid]

Well, I can't speak for those who are at home but I'm one of those wives with ESRD.  And my husband will occasionally make me a sandwich when I get home from dialysis and don't feel well.  But that is about it.  I will see if he will step up when I get a transplant.   But I am not disabled at this point, I still work full time and take care of the house etc.  He had it much worse than me with multiple surgeries when he was a kid and I think at this point he doesn't really see me as "sick" yet. 

[rsudock]

yes I would be interested to hear the experiences of a man with a sick wife. I know that it sounds sexist but I don't really believe man step up the way a woman does. I think in generally women are more nurturing and tend to compromise and sacrifice more...

sorry Aaron and I are having some issues ourselves....the only person you can count on is yourself....


xo,
R

[silverhead]

Well I just have to jump in on this,  I was a husband who spent 5 years taking care of my dear wife 24/7/365, unfortunately she was not really able to do much around the house, but I know how to cook, do laundry and just about any other household task that needed attention.
For her first 2 years we did 3 times a week at a wonderful non-profit center and as soon as we heard word about NxStage I researched all I could and we both really made waves to get the system for ourselves. We were chosen to be the first couple to train in its use and after 2 weeks training brought it home, I knew that it would involve an awful lot of "work" on my part, but that never entered my mind, all  I wanted was the best possible outcome for her. I did all the setup, priming, cannulation, blood draws, packaging the samples  for a courier to take to the airport. I broke down the machine, cleaned everything and then prepared her a meal. mix all that with helping her bathe and dress, getting her out to the car for Hospital, Neph and Nurse visits, putting in the wheelchair and taking it out of the car at every visit was sometimes a challenge because of severe arthritis in my lower back.
I sometimes heard from others that they admired what I did for her, But I know that she would have done the same for me without question or complaint. I took the marriage oath seriously, and it just comes down to the fact that I loved her very much and wanted her around as long as possible. When the end came, She made the hard decision to stop treatment, it broke my heart, but I had to respect her choice and let her go. But I would do it over again........

[MooseMom]

Oh, silverhead, I think I would sell my soul to have a husband like you.  Maybe mine IS like you, but I just haven't had to find out yet, you know?  I just can't imagine having that kind of support, I really can't.  I worry so much that when it is time for me to do NxStage/start dialysis that I'm going to end up pulling all of the load myself, not just the dialysis part but also all of the other things that go toward keeping a house.

Can I ask you one thing, though?  You said that people would tell you how they admired you for how you took care of your dear wife.  Did you ever feel insulted by that?  I mean, it sort of feels like code for, "But you're a MAN!  Men don't/can't/won't usually do this!"  Do you think these same people would have thought to admire your wife if she had been the caregiver and you had been the patient?

Thank you so much for "jumping in on this."  I love knowing you exist.

[boswife]

It is always good to hear from you Silverhead    And MM, i'll tell you another 'manly' story.  Incenter we had the real pleasure of meeting a lovely english lady and her husband of many many many years.  They were in their mid and late 80's and each D visit, he would be there wheeling in that lovely lady, lifting her into her chair, getting her comfortable, setting up her snack, and then go either sit in the waiting room, fall asleep in his car, or visit a bit at the nextdoor McDonalds.  Precious couple. We spoke often and it came to be that her heart was failing badly.  The last time i saw her she told me of her love for that man and that he has cancer and has fought to stay alive to care for her alone.  Frail dear man had to loose her to heart failure within days of me hearing that, and he called to talk of his grief.  I just wished i could do more.  We kept in contact for a few months but havent heard from him for a bit now.  I can only wonder    Any way, Yes, men can and do take on what we woman do.  At least in a few cases i know of.  I always appreciated hearing from Silverhead for this very reason.  It is VERY manly to take on the beautiful care of their loved ones.   Caregivers, man or woman ROCK! 

[texasstyle]

That is such a  great question Moosemom. Hmm... I'll bet there are more husbands (or male cargivers) who actually do a great job than you suspect. At the time time, I do believe it is probably done in a "male" kind of way yet the best way they can. Male and females are so different. I used to think not but as I age, I accpet that. I envision caring in a typical male ay as: first seeing that there is financial secruity. Men as far as my experience so far is men really have thisneed to overse everything to make sure the home exisits. Does that makes sense. After that, a little cleaning(I did say little lol),wash, etc... Then comes mowing the lawn, fixing the car... Just my thoughts

[okarol]

I was a husband who spent 5 years taking care of my dear wife 24/7/365, unfortunately she was not really able to do much around the house, but I know how to cook, do laundry and just about any other household task that needed attention.

Love you silverhead! I think you may be unique though - when it comes to hubby/caregivers! 

[YLGuy]

I find this VERY sexist.  I am a very loving nurturing MAN.  From the time my first was born we traded every other night taking care of the baby.  I did this for all three of my children.  Later, my ex-wife traveled a lot for business.  I cooked, cleaned, dropped off, picked up...basically Mr. mom.  BTW, I do not think this makes me any less of a man.  Just the opposite.  I am very comfortable in my manhood to be able to do this.  With ESRD I still care for my 3 children as I fought for and won custody of them.  It is a little off topic yet I believe relevant to the conversation.

[silverhead]

MM, all I can say is that most of the "complements" I received were from Medical people that we interacted with, from the start we were a team together, Sharon made it VERY clear to anyone that we were a team, and I was to be included in any phase of her CKD journey, in fact her Neph learned very early that we were as educated as we could be and while she was in center for the 2 years he wrote specific orders that the staff was to follow my suggestions as to machine settings and so forth (this after we had a few head butts with take charge type nurses) after that we had no problems. Her Neph was somewhat progressive and was the one we pushed the hardest for the NxStage system, he agreed with us and was able to persuade the clinic to move to that system, in fact he was so interested that for the next 3 years he would come to our house monthly to do our required visit and would take all the time we needed to push for med changes or trials of something new that might help her and was usually able to get us "samples" to help keep our costs down (you can tell I have a soft spot for him).
All the while that this was going on Sharon had her own Primary care Physician, Early on I was so impressed with her that I tried to change over to have her as my PCP but she was full up and was unable to do so, After Sharon passed I received a lovely letter from her and she mentioned how much she and her staff admired my care for her and that if I still wanted to switch she would do whatever to make it happen, and she did, I feel lucky because she is one of the rare ones i think that really care about her patients, How many Docs do you know that will call at odd times and just ask "how are you doing" or I might send an email message to her about a med change for myself and might be sitting at the computer at midnight and here comes a reply from her at that ungodly hour? So I feel blessed with the people we were surrounded with and in no way feel that what I did for her was less than "manly", it was just something that needed to be done and as a team we approached it that way. That's not to say that I enjoy folding laundry or scrubbing floors and so forth, but being alone now I have to do it anyway, I just do not feel an overwhelming urge to learn knitting or sewing, would just as soon go out and polish the car, or I do have to spend a tough day replacing the window motor in the passenger side door, things that I was unable to do the last few years.
I guess this rambled off the road a little but I hope you understand what I'm trying to say.....
Tom

[okarol]

I find this VERY sexist.  I am a very loving nurturing MAN.  From the time my first was born we traded every other night taking care of the baby.  I did this for all three of my children.  Later, my ex-wife traveled a lot for business.  I cooked, cleaned, dropped off, picked up...basically Mr. mom.  BTW, I do not think this makes me any less of a man.  Just the opposite.  I am very comfortable in my manhood to be able to do this.  With ESRD I still care for my 3 children as I fought for and won custody of them.  It is a little off topic yet I believe relevant to the conversation.

It is sexist. And I think it's true. I admire you YLGuy, for the reasons you state. But I just don't think it's typical. I could be way off, but I am speaking from my experience.

[MooseMom]

I find this VERY sexist.  I am a very loving nurturing MAN.  From the time my first was born we traded every other night taking care of the baby.  I did this for all three of my children.  Later, my ex-wife traveled a lot for business.  I cooked, cleaned, dropped off, picked up...basically Mr. mom.  BTW, I do not think this makes me any less of a man.  Just the opposite.  I am very comfortable in my manhood to be able to do this.  With ESRD I still care for my 3 children as I fought for and won custody of them.  It is a little off topic yet I believe relevant to the conversation.

Yep, you're right.  It IS sexist, absolutely.  But I find it very interesting that you would speak in terms of being "less than a man" and "very comfortable in my manhood to be able to do this."  I sense some defensiveness here, and I am wondering why.  I happen to agree with you that being loving and nurturing doesn't make you un-manly, but that you would point this out sort of illustrates my point.  Do you think other men would see you as unmanly?

My husband and I often have what I think are fascinating conversations about gender roles and definitions.  I've come to the conclusion that men have so many more rules to live by.  Women can hold down jobs, raise children, do both, do neither, can cook, sew, create art, like sports and do all manner of things.  Men can't.  Women can have traditionally male jobs and no one really cares anymore, but men don't usually seek traditionally female employment because men have their masculinity to defend. 

I happened to catch the end of a rant on TV by a sports journalist who was upset about the NBA lockout.  What with the NFL lockout, too, he was wondering what men were supposed to talk about.  "Their feelings?  Their relationships?  Their clothes?  Men talk to each other only about two things...work and sports."  So, those were the rules as espoused by a man.  Men can't get together and talk about anything other than work and sports, and if they do, they risk being seen as unmanly.  I didn't make the rules.  Men impose these rules upon themselves, and it seems that as women grasp for more and more freedom, men create more and more rules of masculine behaviour.  That's sexist.

When my son was very young, my ex-husband would occasionally have to travel overseas.  Remember, my son is mildly autistic, so raising him was not easy.  When my ex-husband was away, no one ever came to me and asked me if they could help in any way.  My in-laws lived just down the street, and they never offered any help.  But if I was away or if I was sick, they were over like a shot to help my ex out with our son.  They'd invite them over for dinner, etc.  Why was that?  Was it because of some sexist idea that men are incapable of looking after their disabled child?  Or is this some unspoken lack of expectation that a man won't be a caregiver?

When I found out I was pregnant, my job paid as much as my husband's paid him.  So I asked my husband if he'd like to stay home and look after the baby.  I didn't want to assume anything, and I wanted to give him a choice.  I was willing to be the working parent.  He declined the offer because he was afraid of his dad's disapproval because this is not what men did...  Again, men just make up so many rules for other men.  It's a pernicious kind of sexism that I don't think gets enough scrutiny.

So yeah, YLGuy, if you feel insulted, I don't blame you because if I were a man, I'd feel insulted, too.  But the fact remains that I don't see too many men posting in this particular forum.  I am guilty of being sexist because quite frankly, I truly cannot imagine my husband doing for me what silverhead did for his wife.  The last time my husband went to a neph's appt with me was 7 years ago.  And this is my biggest fear about starting dialysis, that my husband won't know what to do; what's particularly disappointing is that I don't expect him to.  Maybe that's what sexism really is...the lack of expectation.

[MooseMom]

Silverhead, I'd rather wash the car than fold laundry, too.  I'd also rather nip down to the sports bar than cook dinner.  No one questions my femininity.  Mostly, people are impressed that I know about the offside rule and have an opinion about the designated hitter....

[Poppylicious]

We still live in a (bit of a) sexist society, but I don't think either silverhead or YLGuy are by any means unique with the roles they carved out for themselves.  I'm pretty positive that if I was the ill one Blokey would go out of his way to be as supportive as possible, but I'm hoping I will never have to find out.  Men and women often have differing viewpoints as to what constitutes as being caring and supportive though, and I know that I might not appreciate his idea of caring and supportive. 

For what it's worth, I am a terrible wife.  I nag about food and fluid and medication and getting enough sleep, I don't drive, I only work part-time (Blokey works full-time) and, apart from picking up his medication once a week, I don't do anything different to what I was doing before Blokey became ill.  Oh, except I now don't get grumpy and huffy-puffy when I'm the only one doing the housework.  I HATED Blokey being on PD.  I've only been to haemoD four times in two years, and each time was purely because we were off away immediately afterwards.

Still, if I was ill I would still do things like the housework; Blokey doesn't have a clue and even if he did, he wouldn't do it correctly and I'd have to do it again.  One day I'm going to be a great mum as my kids won't have to lift a finger!

 

sorry Aaron and I are having some issues ourselves....the only person you can count on is yourself....

*huggles* ... you've had a highly emotional couple of weeks; I hope everything sorts itself out.

[YLGuy]

Yep, you're right.  It IS sexist, absolutely.  But I find it very interesting that you would speak in terms of being "less than a man" and "very comfortable in my manhood to be able to do this."  I sense some defensiveness here, and I am wondering why.  I happen to agree with you that being loving and nurturing doesn't make you un-manly, but that you would point this out sort of illustrates my point.  Do you think other men would see you as unmanly?

My father was a Marine and then a police officer for 20 years.  At 62 He parachuted onto the North pole.  He fought in the Golden Gloves.  I have 1 sibling, a brother 3 years my senior.  He was a state champion athlete and beat the crap out of me on a regular basis.   I was raised in the northeast near New York.  The culture there still for the most part has the women raise the children.  Men do not cry.  They do not do, "women's work". 

I have done all of that macho crap.  I have dove off of bridges, jumped out of airplanes, SCUBA, owned motorcycles... When I had children the way I looked at things changed, a lot.  I LOVE being a dad.  I feel that I was put on this earth to be a dad.  What defined me was my family.  I was not asked to help with the kids, I wanted to be a part of their lives.  A big part.  I see way too many fathers buried in work and their own activities missing their children grow up.  I am sorry, but your kids aren't going to care how big your house was or what kind of car you drove.  They are going to remember whether you were there for them when they needed you.  From staying up all night with them to just running back home to get the lunch they left on the counter.  Dusting them off and giving them a hug when they fall down.  Making them laugh at you when they are feeling down.  It takes a man to step up and take that role.  I fought hard to have the right to do so because I felt I was the better parent.  I put them first and she put herself first.  I guess what I am saying is that my definition of  man has changed.  A man puts his family first.  I have 2 tattoos: A sacred Heart of Jesus on my chest and my 3 children's names on my arm.  God and family.  I grew up in a culture that would disagree with my current definition and yes, I probably am defensive about this because I feel so strongly about it.  There are other more personal reasons that I do not want to share on a public forum. If you really are that curious about what they are feel free to PM me.

[The Noob]

when my hubby and i met, we were both firefighters, had both been single parents, learned to work calls as a team very well. we both did everything in and out of the house as needed. my kids had a summer visit with their dad and came home with lice. i was "upset" but he wasn't. i still remember us standing in the kitchen doing treatments on the young uns and him laughing and helping kids cope. as an old farmer he had all sorts of home remedies. nowadays, he usually cooks on the grill for us as its too hot to run oven.
i had a special respect for him watching what a good leader he was on the job, then see him washing dishes and just doing what needed done. if i had been the one to get sick, i don't know how'd we'd have made it as he would of still had to work. i guess this worked out for the best.
you can't be a good medic and be sexist. i think it was the 2 of us coping with every and any patient that shaped this. we both just got in there and got the job done, whatever it was.

[Desert Dancer]

Well, I generally do everything that has to do with my dialysis because I'm the one on dialysis and that's just the way I am; I don't ask for help unless I'm forced into it. But for three months at the beginning of this year I was completely out of commission - and I mean totally. I couldn't stand, couldn't walk, couldn't do anything for myself, couldn't even sit on the toilet. Andy stepped up like you would not believe. He took over everything from setting up the machine for treatments to doing the monthly disinfect on the RO system. He drove home on his half-hour lunch every day to make sure I was okay and to make sure I ate, practically carried me everywhere, dressed me and did all the cooking and laundry. He has always gone to all my doctor's appointments with me and remembers to ask questions I forgot. There's no way I'd have gotten through it without him; he was (and is) completely amazing and I am so, so lucky to have him.

[lmunchkin]

I do believe my husband would do the same for me if I were the one suffering this disease!  He is a great guy!

lmunchkin     

[billmoria]

A different take on this subject. We are two guys in a civil partnership. MY DAVE IS HANDICAPPED BUT HE STEPS UP WHENEVER I NEED HIM. I don't have to ask, he always knows. He has offered me one of his kidneys - no luck there however. I feel so badly for many on here who basically have to go it alone.

[cariad]

I have an almost identical story to Desert Dancer. Viral meningitis almost killed me, I could do nothing for myself for months and believe I nearly died of starvation. Gwyn had to spoon that first food into my mouth, and cleaned up when I vomited it all back up a half hour later. He also rushed home from work to put groceries away for me when I decided I would attempt to do our shopping and surprise, could not lift a single item out of the car and the Cal heat. He did everything for me, was always encouraging me to leave it to him, just go rest. He still does this. He brings me a cup of tea every morning, as mornings are still a struggle for me much of the time. So I do not think that men are any more lax at caring than women, and I shudder to think what would happen if I were in Gwyn's place as I consider myself a pretty impatient caregiver. Our support person was also male (married dad of two) and he was so incredible we could just never thank him enough. He has talked about leaving his current career (in a male-dominated field) to go into nursing.

A person's biological sex is no way to determine how good a caregiver they will be at a push. Nor is presence on IHD. Gwyn is a terrible typist and I think he feels IHD is my thing and he won't intrude. He does not have the patience for this form of communication, but if we could all meet in person, he would be the more active member of the group.

[MooseMom]

I don't think it is a lack of ability...I think men are just as capable of caregiving as women are.  That's not really the question.  The question is more of a societal one.  Do you think that our western society has lower expectations for men in this regard than they do for women?  Is it easier for a woman to take time off work to care for a sick family member than it is for a man?  Before I had major surgery, my husband told his boss that he might have to take some time off, and bossman said, "Do whatever you need to do."  We had planned for my husband to go to work as normal but to come home around noon-1:00 to take me to follow up appts, help out around the house, etc, just for the first week of my recovery.  Well, I almost didn't make it through the surgery, and by the time I got home, it would have been really nice to have had someone to offer just an extra pair of hands.  But no, at the last minute, bossman decided that my husband needed to be at work, so I ended up having to drive to my appts and just do for myself.  So, it was a man who decided that my husband's work was more important than my well-being and my need for a caregiver.  Since bossman made this decision on the spot, I didn't have time to arrange any other careplan, so I was well and truly stuck.  I've never forgotten that, and for this reason, I don't feel like I can trust anyone but myself to take care of me.  There always seems to be something more important than me.  It seemed to all be code for, "You are a man and are not expected to be a caregiver.  I am a man and I make the rules."

I have no doubt that my husband has the ability to look after me should I ever need it.  The question is whether or not other men will let him.

[cariad]

Hmmm, not sure if you were referring to my post, MM, but I was not speaking about ability, either. Obviously, any reasonably well-adjusted adult has the ability.

Gwyn was forced into leaving me at the hospital for 3 days when I had meningitis. Since the company that he worked for was so cheap and so incompetent, they only had one person there who truly knew what he was doing, and that was Gwyn. Over-qualified does not even begin to address that situation. Gwyn almost certainly would have lost his job had he stayed with me. Mentally, those three days he was gone were among the most difficult of my life - I could not get out of bed, I could not speak for very long, I could not eat, and with meningitis you are usually very light-sensitive (I was) so even television was of no use. Lots of talk of putting a tube in my stomach to avoid starvation. After the fact, due to no real direction on coming off the powerful opioids, I had akathesia which is probably the only condition that I would say is scarier than postherpetic neuralgia. Again, I encourage anyone to google it, but be prepared for the nightmares. Very, very rare, with a suicide rate that is through the roof. Not eating anything for 10 days but also with an unavoidable compulsion to walk through the apartment, and having to suss out well after what the hell was going on and that no, I was not insane.... Gwyn never turned away even as a lesser person may have accused me of malingering. He tried to hold me down on the bed (not in a violent way) but let up very quickly when he saw that I was going to keep trying to fight him off because something bizarre was happening. He would rush home on his lunch hour, through LA perma-traffic, to help me. Threats of being sacked were constant, but Gwyn had to make that decision a long while ago wherein his priorities lay. It had nothing to do with his sex.

Do you remember that Canadian business owner on here who said that women would ring up work and say that their kids were sick, and reminding them that they would not get paid for that day seemed to magically solve the problem? He had convinced himself that he was some sort of managerial genius because they were obviously all liars, because as we parents all know, kids are so rarely sick, this was UNDENIABLY an excuse to go party all day. So, there was a male who I don't think was a parent himself making this decision for women who worked at his (I am going to guess horrific) company. What you have experienced is not, in my opinion, indicative of a more general trend against male caregivers. It sounds like your husband's boss had no respect for what you were going through - who knows, maybe his wife had a similar op and it was no big deal, so he drew his conclusions from there. Would Gwyn step up again, even at great risk to his job? Like I said, he made that decision long ago. Heaven forbid he has to prove it, but I already know that he would.

[kyshiag]

Well, all praises to God that I have never been in this situation.  And I do believe that I fair much better as the caregiver than I would as the person being cared for.  With that being said, I spent the night in the hospital a few months ago--I had the option of going home but hated my job so took the hospital up on a one night stay.  When I woke up in the middle of the night I saw my husband, eyes wide open looking like a puppy left out in a thunderstorm.  His first words to me were, "I'm gonna take really good care of you."  I just smiled and looked at him.  I then laid back down, thought about the quality of care he would provide and said to myself, "I got to get the hell out of here.  Sickness is not an option."

[jbeany]

I read a lot of posts here from women who do so much for their husbands who have esrd.  What do married women do who are the ones who have ESRD? 

Some of us split up as soon as we have to start dialysis, and then get divorced so he can go be with his healthy girlfriend.   

[ESRD Survivor]

I met my husband after I found out I needed a kidney transplant.  He knew coming into our marriage I had ESRD. 1 month after we were married I started pd in 1985, totally different than it is now.  2 months later I had my first transplant.  Lots of ups and down with both of us.  During that time, we had two premature children, one with mild cerebral palsy and he was electrocuted in 1987.  What a start to a marriage. After all that there were some small ups and downs until 2007 and my health went down hill.  Through all of this we have been partners no matter what.  I do think it takes a certain kind of man to handle all of it and I sure found that certain kind of man.