The Looks On Their Faces -Priceless!

[PrimeTimer]

My husband's parents are not exactly the loveliest people and despite him being on dialysis for over a year and everything we've told/shown them about it, they still have their heads up their you-know-what about it (or pretend to). They have never seen him or anyone for that matter, dialyze. SO...the next time my husband goes out of town to visit them he's thinking of asking one or both of them to accompany him to dialysis, just so that they can er,  "get a better understanding" and fully appreciate what it's about and what he goes through to....SURVIVE. As his mother describes it; "oh, it cleans your blood and it's good for you, son!"...as if it's the same thing as making sure you eat from the four food groups, exercise, take your cod liver oil and get plenty of fresh air and sunshine...yada yada yada...We can't afford for the both of us to go, so I am staying home (oh darn, what a shame) but I'd sure love to see the look on their faces when he asks them to go to dialysis with him!   

[Charlie B53]

Neither Parent has a weak heart?  Aside from turning them ghastly grey, it should be a very informative adventure.

I'm hoping it is a smooth treatment, no excessive blood spill.  That would surely leave an impression!

Too bad he can't get it all on film so he can bring it home to share with you.

[PrimeTimer]

Well, hubby is on the way home, talked on the phone last night. Neither one of his parents went with him to the center for his "vacation dialysis".    Didn't surprise him but I could tell he was hurt. His mother used the excuse that she'd probably faint and his dad dropped him curbside. Then, later on at dinner, apparently his mother asked him "what happened or what caused you to end up with kidney problems anyways?" (as if it's his own fault). This comes after both he and I have explained NUMEROUS TIMES his diabetes and ESRD to his family, including sending literature and videos. Really burns my butt that his parents don't give a rat's A--  about their son and what-all he endures. I'm not trying to give myself any credit but gosh darn, I feel as tho I am the only one in his life that "gets it" and cares to battle this damn disease with him. My husband was adopted and no one in his adoptive family has ever had to be on dialysis or has had to deal with any serious chronic diseases however, his adoptive mother's own father died from diabetes and she has diabetes as well. But...she's well into her eighties, claims to not need insulin (which may or may not be true) and is either in denial or just too lazy to have ever learned about diabetes and the fact that it affects the heart, eyes and kidneys, let alone a person's overall health. Quite frankly, I'm surprised she has gone this long without crashing and ending up in the ER and requiring insulin but...maybe she has lucked out. Anyways, since he only had one treatment in the past four days while "on vacation" to visit his nincompoop parents, I will have the cycler ready and primed for his arrival tonight so we can give him a nice long treatment. I expect he will have more fluid on-board than usual, was to be expected so we will go at a nice slow pace to get it off of him and then he can have a nice dinner in which I've already prepared so that it will be ready for him and then he can rest. Tomorrow is a new day! 

[Charlie B53]

So sorry to say it, but his Parents are a prime example of the apathy found most every where today.  If something doesn't have an immediate affect to interupt their Frosted Flakes in the morning, or upset their evening TV viewing, they don't see it, won't bother to learn about, and simply do not care.

Sad, because Families once were the very core of our lives.  Any reason to get together, every weekend, every Holiday, EVERY member within a reasonable commuting distance, got together and shared anything and everything that went on in their lives.

I miss that.

Son lives in the same town.  But we don't see him but maybe once or twice a week, sometimes more.  Depending on what we are doing.  If either of us has a project, the other is there to lend a hand.

Daughter live almost 100 miles away but is on the phone to Mom DAILY.  If Mom don't answer her cell, Dau calls me to find out what's going on.  We meet for lunch of dinner at least twice a month.

But apathy is something that is very difficult to overcome.  I'll give you credit for trying, but don't expect much change to occur with them.

Your Husband is a very fortunate person to have you in his life.  Together you two will do well despite the lack of 'family' support.

Take Care,

Charlie B

[PaulBC]

Honestly, I cannot even imagine this. There must be more to it than just a being disturbed at seeing dialysis, because that would be easy to overcome if they were even slightly concerned for his well-being (and not in heavy denial about it).

I think he's far too understanding about the whole thing. If they were estranged, I could kind of see this but if they can eat dinner together then why on earth can't they accompany him to a life-saving medical treatment?  Seriously he (and not his parents) is the only one with any physiological to faint during dialysis, and maybe they might want to be there because they are worried that everything will be OK. Isn't this what normal people do? Wouldn't normal parents rather be there to see that things are OK (even if there is actually nothing they can do about it)?

It goes beyond apathy. It would have been totally appropriate for him to insist that they come, and express some anger over the whole thing if they refused. If they don't give a damn, there is nothing to do about it, but if they're going to claim to care, then being with him for something like that is an obligation not a favor.

[PrimeTimer]

Funny thing....he gets very little support from his own family (or from mine for that matter) but when checking in at the airport, he comes upon a complete stranger, the TSA agent, who of all people, say they understand my husband's need to travel with insulin, an ice pack, syringes and medications...turned out, the TSA agent is also a diabetic and ALSO does home-hemo dialysis!  They pulled up their shirt sleeves to compare "fistula's and buttonholes". My husband is usually the quiet shy modest type so for him to pull up his shirt sleeve in public like that and talk "shop" with this guy obviously made his day. I am so proud of him! He's got some fight in him and saw the TSA guy as an ally. Kind of like "it takes one to know one". I wonder how many passengers overheard their conversation and the words "diabetes, fistula and dialysis" and started talking about it or doing google searches. Who knows, maybe my husband's trip may have helped to educate a few. But his own family? Oh heck, they want to know more about where to go to dinner and how much is it going to cost than how their son is doing...

PaulBC, pardon me if I sound out of line but your little girl is very lucky to have you for her daddy and her advocate. You are helping to prepare her for the future, just like you would anyway and well, I am sure it will stick with her. There were many things my parents taught me, along with a few elders that were close family friends, that have stuck with me my whole life. Your daughter has herself a real partner in you to help her get off on the right foot in life and I think because of that, she will be more advanced than other children and not just among children with the same health problem but her overall outlook on life and ANY challenges she faces, whether it be with her health, education, a job, relationships, life decisions, etc. All because you are helping to find her the tools and support RIGHT NOW that she needs. It's very sad that such a young innocent child is having to deal with this but maybe one of the biggest reasons that she is handling it so well is because of you...you are taking this journey with her and perhaps she knows that and so she has less stress and more confidence. I think that's why we "carepartners" need to somehow look at ourselves as being more like "team members" and when someone doesn't understand our needs, our schedules our commitment to dialysis and they make snides remarks, perhaps we just ought to outright ask them "who side are you on??" I know whose side I am on...

And with the talk of sandinistas, something also made me think of rockin the casbah...

[PrimeTimer]

So sorry to say it, but his Parents are a prime example of the apathy found most every where today.  If something doesn't have an immediate affect to interupt their Frosted Flakes in the morning, or upset their evening TV viewing, they don't see it, won't bother to learn about, and simply do not care.

Sad, because Families once were the very core of our lives.  Any reason to get together, every weekend, every Holiday, EVERY member within a reasonable commuting distance, got together and shared anything and everything that went on in their lives.

I miss that.

Son lives in the same town.  But we don't see him but maybe once or twice a week, sometimes more.  Depending on what we are doing.  If either of us has a project, the other is there to lend a hand.

Daughter live almost 100 miles away but is on the phone to Mom DAILY.  If Mom don't answer her cell, Dau calls me to find out what's going on.  We meet for lunch of dinner at least twice a month.

But apathy is something that is very difficult to overcome.  I'll give you credit for trying, but don't expect much change to occur with them.

Your Husband is a very fortunate person to have you in his life.  Together you two will do well despite the lack of 'family' support.

Take Care,

Charlie B

When we first got together, it was under some very serious circumstances both at the workplace and personal grief outside of work. Little did we know, we were intentionally put on an assignment together because of a manager's idea to play matchmaker. Ever since, we'd get to laughing so hard telling each other that we are like "two peas in a pod". Don't know why, but that cracked us up for hours, laughing til we cried and our sides hurt. We took our jobs very seriously, never a giggle or a joke at work but turned out, when we'd get together outside of work, we could not stop the silliness of laughing over nothing. When we married, I gave him a gold money clip as a wedding gift and had the back of it engraved with "To MY Old Shoe" ...because he feels as comfortable to me as a pair of my favorite old shoes, you know, the kind that are so comfortable that no matter how old and ratty they become, you'll never give them up.

[PaulBC]

You are helping to prepare her for the future, just like you would anyway and well, I am sure it will stick with her.

I've always had high expectations for my daughter, and giving that up would be an unbearable loss. There really is no alternative.

But your in-laws are setting a very low bar. Accompanying your husband to hemodialysis is a simple courtesy, not a big burden. What is their excuse again? Can't stand the sight of blood? Can't stand the needle going in or seeing blood go through a tube? But they have no problem knowing he's going through all this and not seeing it? It doesn't make much sense to me. Even a casual friend or coworker could be expected to show some interest and willingness to be there.
 

[Michael Murphy]

Some people feel if they deny something it does not exist.  They may be avoiding dealing with a situation they don't understand.  I keep my wife away from dialysis cause if she knew what it was like she would freak.  Some thing some people just can't deal,with.

[PrimeTimer]

His mother used the excuse that she'd "probably faint" and his father dropped him off curbside and simply said he'd be back to pick him up. Perhaps I am letting my anger get the best of me here but, I knew long before my husband was diagnosed with ESRD and on dialysis that his parents are self-centered and rude. And when we started doing home-hemo, instead of any kind of moral support, all we got from them (even after trying to educate them on it) was "Oooh! You really shouldn't be doing that at home. He should go to a professional center and let real professionals do it". And then when he was in the hospital last year for an infection, one of them said "See! Not even six months into it and things have already gone awry!" There was no "How is he doing? Does he need anything? We're here for you guys". Nope, nadda. Not then, not now. And I agree, some people just cannot deal with some things in life, I get that and understand, I really do but, I wonder how they'd feel if someday they end up in the hospital or a nursing home and their son says "Sorry, can't come to visit you, I just cannot handle that"? Anyway, I get the feeling this just might come back to bite them in the butt some day and there won't be anything we can do about that...    Makes me think of that sad song "Cat's in the Cradle"

[PaulBC]

Perhaps I am letting my anger get the best of me here but,

Nah, I'd say that you are showing remarkable restraint.

I knew long before my husband was diagnosed with ESRD and on dialysis that his parents are self-centered and rude.

If it's just that, maybe that's the whole explanation. But if I needed hemodialysis and someone who was supposed to be close to me refused to even watch, I'd be seriously wondering if they hated me. In fact, I'd come right out with it. I'd ask "OK, so what is it? You hate me? Or you just don't care either way? What?" I can understand what Michael Murphy said--he's trying to protect his wife from having to see it (though I sort of wonder; hasn't she had to go to the hospital with him?), but it's different coming from the other side.

Just to be clear, is it the horror of seeing blood go through a tube, or the horror of seeing the goings on with other patients at a dialysis center? Maybe because I only have experience with pediatric hemodialysis at a top children's hospital, I'm missing what is supposed to make visitors uncomfortable.

My son came along to see his sister receiving dialysis. He got squeamish when I explained why the tubes were red, but did not faint. My sister (her aunt) visited and didn't just watch but struck up a conversation with the dialysis nurses and used it as a learning opportunity. I mean, nobody likes dialysis, but I sort of expect that everyone can develop some comfort with medical procedures that they themselves might need one day.

It could also be a generational thing. But again, I took lots of photos, and my mother (over 90 and doing well with a sharp mind but unable to travel) saw pictures of her youngest grandchild with a catheter in her neck and that didn't seem to faze her. She was happy to see that my daughter was getting good care and looked happy.

 I'm trying to understand if this is just a form of denial beyond my grasp or there is really some level of estrangement. Are they rude to everyone or do they really not like him?

And when we started doing home-hemo, instead of any kind of moral support, all we got from them (even after trying to educate them on it) was "Oooh! You really shouldn't be doing that at home. He should go to a professional center and let real professionals do it".

This is a little more understandable, and would be my first reaction without any prior experience. Actually, home hemodialysis would make me very nervous, but now that I'm accustomed to PD, it is not that hard, I am very happy my daughter isn't going back to the hospital three times a week. There is a great psychological benefit to being able to carry out a treatment at home. I also feel more involved and competent about the whole thing. But honestly, when they first started telling me about PD I kind of wondered if I was being pushed into an inferior therapy to save money. I did my own research to turn around that view. However, the initial reaction "I am not a doctor. Let someone else do this." is understandable.

And then when he was in the hospital last year for an infection, one of them said "See! Not even six months into it and things have already gone awry!" There was no "How is he doing? Does he need anything? We're here for you guys".

Yeah, some people can't resist saying I told you so. Maybe there is something nice about these people that you haven't told us, but I sort of wonder why he bothered visiting in the first place. Maybe he felt a sense of obligation, but they clearly do not.

[Charlie B53]

.................. I wonder how they'd feel if someday they end up in the hospital or a nursing home and their son says "Sorry, can't come to visit you, I just cannot handle that"? Anyway, I get the feeling this just might come back to bite them in the butt some day and there won't be anything we can do about that...    Makes me think of that sad song "Cat's in the Cradle"

I seriously doubt that this would happen.  You and your Husband are too caring and couldn't stoop soo low as to purposely shun Family, not matter what their history is.