I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: PrimeTimer on April 01, 2017, 10:34:34 PM
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No one in the family ever asks how we are doing...they never ask how hubby is doing on dialysis or how just in general we are doing. I get an email from my brother telling me an old schoolmate has passed away. A kid I haven't seen in over 30 years. Yes, that was sad news. But that's all I got...was his email telling me about someones death...not a "Hi, how are you guys doing?" or "How's life treating you these days?". Nope...just an email telling me about a kid who use to flirt with me has died. And that was it. I suppose that's why I never even bother sending Xmas cards out anymore. :waiting;
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It has very much become a 'Me, Me, Me' world. Families move apart instead of staying nearby. The contacts slowly begin to get fewer and farther in between. Everyone caught up in the rat race of their daily lives. Most don't even realize it, how insensitive they have become to what should have always been the close ties that bind a Family together.
I have to admit that even I, being aware of this, am still guilty of not maintaining enough communication with my remaining Brothers and Sister all still back in our home town.
If you really want to change it, get busy.
do something to wake him up. Call or write, and spell this all out to him.
I can safely bet his response will be surprise, that he never realized how much you care. Another safe bet is he also cares for you, but never knew what to do. Us 'Guys' can be pretty dumb sometimes.
Take Care,
Charlie B53
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Families, men don't go there ;D
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No one in the family ever asks how we are doing...they never ask how hubby is doing on dialysis or how just in general we are doing.
I know! What is this? You expect this from friends, but from family? I'm sorry this happened to you. You know that WE care, though, right? :grouphug;
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If you rely on the other person to make contact you will gradually loose contact. I call my sister 4 to 5 times a week just to check in. I only have my sister but I grew up with a father who contactied his 2 sisters and 2 brothers every week.
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If you rely on the other person to make contact you will gradually loose contact. I call my sister 4 to 5 times a week just to check in. I only have my sister but I grew up with a father who contactied his 2 sisters and 2 brothers every week.
Awww..that's really nice!
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Guess reality is, is that some people, even family members, can be cold, selfish/self-centered and just plain rude. No matter how many times you explain things to them. I think somehow I have to find a way to accept that "some just will not ever get it". And I'm not necessarily talking about kidney disease and dialysis, but the challenges my husband and I have faced these past several years. I know that unless they've gone thru the same thing, we should not expect people to understand but gosh darn it, sometimes just being asked "how are things going" could go a long ways. I never expect anything in return but when I've done something nice or helpful for someone, you gotta admit, it's nice to at least be acknowledged for it. Nah...I've never gotten that. And when someone is rude to me over and over again, I eventually just stop trying with them. Some people I've totally cut off because I've reached a limit with their attitude and disrespect. Not having them in my life anymore actually has caused me less stress and anger. I did that with a job few years back too. Had a very very good job that I really really liked but found the company to be rotten to the core. I was not willing to go to jail for them. So, I quietly left. I know I did the right thing or what some might say "I had guts" but try telling that people. Seems that having the guts to leave a good paying job because your employer(s) are crooks doesn't count for a whole lot. I don't care. I did the right thing but because of the nature of my work, I cannot openly divulge what I use to do for a living or what I know or details. I'm sure to a lot of people I just look dumb and stupid but oh...if they only knew...But gosh darn...shame on me for quitting a good job! (that's how I've been treated by family members). Guess in their minds I am a loser...ha..what little do they know...but it shouldn't matter. I feel my husband and I deserve some respect, regardless of how our life is going and what we can or cannot control. How much money we have/don't have shouldn't matter. Having problems and struggles shouldn't matter. Being sick shouldn't matter either. Being respected, liked and loved for the simple fact that we are good people is what should matter. But these past few years it's as if we have the plague and should be avoided. Thankfully I have my "family" here at ihd! Meanwhile, I am going to have to learn better coping mechanisms. I've gotten good at handling some things but have a long ways to go as far as learning to deal with other things without letting it ruin my whole day. Family and insurance companies fall into that category. We need a manual for that!
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No one in the family ever asks how we are doing...they never ask how hubby is doing on dialysis or how just in general we are doing.
I know! What is this? You expect this from friends, but from family? I'm sorry this happened to you. You know that WE care, though, right? :grouphug;
Thanks MM! Yes! I definitely know that our family here at ihd cares! :beer1;
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PrimeTimer, your post makes me feel very sad. I'm glad you left that job behind. It's a matter of personal integrity, right? I mean, you have to be able to live with yourself.
You don't have to have cancer to have some human capacity for empathy. You don't have to know exactly what it is like to be chronically ill to be able to just be a kind human being.
If you ever find those manuals, please let us know!! :2thumbsup;
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One other thing is most people don't know how to handle a serious illness in people, instead of checking to see how you are they completely ignore the whole subject. One way to deal with this is to give them positive news after a while they become use to the subject and you can begin to tell them more .
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Guess I'm also on edge lately because my nerves are frazzled. We've got 5 adults, now possibly 6 and 3 children living in a one-bedroom apartment above us. Our walls and ceiling are constantly shaking from the constant bombardment of running, jumping and stomping going on. It will be quiet and suddenly there are loud "booms" and we find ourselves startled out of our seats. The apartment manager isn't interested in having a word with them and I've tried but they are either pretending to not know any English or they really don't. ::)
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One other thing is most people don't know how to handle a serious illness in people, instead of checking to see how you are they completely ignore the whole subject.
You are right. Most people really don't want to make you uncomfortable or to upset you and really don't know what to say. So, they say nothing. I can understand that. Most people don't know the first thing about kidney disease (they're lucky!) and don't want you to think they are just ignorant, so again, they say nothing.
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Guess I'm also on edge lately because my nerves are frazzled. We've got 5 adults, now possibly 6 and 3 children living in a one-bedroom apartment above us. Our walls and ceiling are constantly shaking from the constant bombardment of running, jumping and stomping going on. It will be quiet and suddenly there are loud "booms" and we find ourselves startled out of our seats. The apartment manager isn't interested in having a word with them and I've tried but they are either pretending to not know any English or they really don't. ::)
That would drive me mad. I can certainly see how nerve-frazzling this must be!
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How are you PrimeTimer? How is your husband?
If it makes you feel any better, I know exactly what you mean. My dad's mother often calls and complains about all her ailments. If we bring up anything going on with us, she has that and worse. She didn't even call me after a recent surgery. Even though it was minor surgery, it still hurts. It is hard sometimes, but I just don't call her and try to be nice when she does call.
This society has moved to electronic communication, which can be great for people who live a long ways away from each other or for support forums like this, but can be isolating in terms of really caring for one another. "Your hurt is distant so I don't need to worry about it" type thing. A lot of times it is subconscious. I am sorry you have felt this way and will keep you in my prayers!
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Check with the building inspector. I had a similar problem many years ago when the building management allowed a employee to move in to a basement room under me. Made my life a living hell. I contacted the building inspector, he told me their was nothing he could do, I asked to see the certificate go occupancy they were evicted 2 days later and the complex was fined. In your case many municipalities have a law on how many people can occupy a single bedroom apartment where I live it's 2 adults and one infant. That many people over you can be stressful. If all else fails report them to I immigration.
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smartcookie: THANK YOU for asking! I've tried talking, writing and emailing and no matter how I present it or spell it out for them, nothing has gotten thru to these people. So, I give up. I've been silent and even then no one is asking why. At this point, I think for my own sanity and health, I need to find some way to cope with my own feelings rather than try to get any of these folks to understand. When I don't think about them I feel and DO better but the moment I let them into my thoughts, it's all downhill from there. I need to grow a thick skin or shut off certain thoughts.
Michael Murphy: This is sort of a delicate situation. I'm afraid to complain about these people in fear of retaliation or being called a racist. Two of the men living up there really creep me out. Can't put my finger on it but I do not get a good feeling about them. It hasn't happened very often in my life but there have been people who have made the hair on the back of my neck stand up and these 2 guys give me that feeling. A bunch of people crammed into a small apartment like that is not normal. The living conditions must be mighty uncomfortable for them but they've been doing it a couple months now. I try not to judge but I sense something not right. Meanwhile, all the noise drives us bonkers.
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The building code is not racist it's there to keep living conditions fair. Plus the municipality is collecting taxes for a single bedroom apartment and provides services for a multi bedroom apartment. I am about as liberal as they come but if the apartment is out of code report it or move.
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An anonymous call from a pay to make the report, no names, etc.
If you don't do it, it won't get done.
Be careful with your words. Do not mention the noise above, only there may be that large number pf persons living within such a small apartment. Inadequate bathroom facilities, etc.
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I feel this way a lot too. No one has a clue of how hard this is. When someone has cancer they have fundraisers and benefits, friends and colleagues are concerned and worried, but in reality some patients have radiation/chemo for a few weeks and get on with their lives; how would you like to have chemo every second day forever?
Mine and my husband's family will ask how he is or how we're doing but even then it's not like they ever do anything.
It's been almost three years now and not one of them (not even his children) would come and just sit at the house and watch TV with him when he's on dialysis. Seriously, just a visitor to help pass the time would be so helpful.
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justagirl: That's the kind of stuff I'm talking about. My husband isn't hard to please and he is grateful for every little thing in life. The most simplest of things please him. He thinks that because my family doesn't talk that it must be because they think he's ruined my life. That really saddens me that he feels that way. Truth is, my family never really was very considerate (to me) to begin with, long before we even married.And I've had it "up to here" with his family and their insults so I no longer speak to them either. Guess that's why at this point it really bothers me. Been going on for years and I think I am done "trying" with them. The conversations I have on here I should also be having with family, even about noisy neighbors upstairs but I've tried and tried and now I think I am done trying. Thank God for my husband and our "family" here on ihd!
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We had a "problem" with my eldest sister (who has a genius level IQ-and went through K-12 and 6 years at USC (Pharm d) with a 4.0 grade point average...when we were out in Socal on a visit a few years ago. She stated that my wife's mom wasn't a part of the "family", directly to my wife...while I was at the store getting food supplies to stock their refrigerator while we were staying at their place.
When I got back from the store, my wife was outside crying-and I asked her why. She told me what happened. I unloaded all of the supplies into the refrigerator, loaded the car up with the family and left my sisters house without saying a word. Some smart people....are really stupid!
BTW, Holly was on dialysis then (and we had arranged to have it done in SoCal). I called one of my friends who lived in the area and he opened his house up to us. He said one thing that will forever stick in my mind...You can't choose your family but you can sure as heck choose your friends. We have/had enough going on in our lives...and I have no time for drama/BS....or for people who thrive on perpetuating it.
Our friends (and family that we talk to) know all about our situation with Holly and her health issues, due to Facebook. That's the one thing I like about it. When Holly was transplanted...everyone knew instantly what was going on.
As far as my oldest sister. We were just in SoCal last week. I didn't want to deny my daughter the ability to see her aunt, so we visited with my sister for a few hours (and even bought dinner for everyone). She offered up no apologies, I offered up very little conversation. For the rest of the time...we had a BLAST and enjoyed ourselves immensely.
PrimeTimer...You did the right thing. Don't worry about what they think! :)
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We had a family reunion the Thanksgiving after my mom had passed away. She had been on dialysis for 5 years. Another aunt had recently died; she'd been on dialysis 8 years. Another cousin had recently been transplanted after having been on dialysis for 3 years (he was not present). So, even though all of us who had had CKD had different diagnoses, dialysis and renal failure was a subject my family knew something about. Everyone at the reunion knew I needed a transplant, but not one single person even asked how I was doing. Not one. I didn't expect (or want) anyone to offer to be tested for donation, but my God, to not even ASK me how I was feeling? Really?
One branch of the family is particularly "Christian', which makes it even more galling. They're the ones who send me Christmas cards telling me how much they prayed for me to get a kidney. But they had nothing to say to me to my face that Thanksgiving. God knows their hearts.
So PT, as you see here, you are in good company. Family. Ugh.
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Some families are toxic and best separated from--after making a reasonable attempt to connect. You can create a family that works for you from friends.
At this point, the only member of my family who is still alive is my older brother. He has always been quite cruel to me so I have nothing to do with him or his family. They are in a different city, so that helps. But i haven't seen nor heard from him for over 20 years. I don't miss him at all. I refuse to let him abuse me. There comes a point when you have to give up what is often called idiot hope-- hope that is, well, hopeless.
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Xplantdad it sounds like your sister may be asbergers syndrome person. These are very smart people who actually are mildly autistic and have absolutely no ability to deal with people. They are blind to any nonverbal signals from other people so would not know they were being offensive. I firmly believe that if some one is nasty and miserable I won't have anything to do with them. But generally I believe never blame malice as the motive for behavior. When stupidity vcovers it.
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Not everyone is Graced with the common sense that God gave a Rabbit. Or so my Gramma used to say. She was a wise Old Lady.
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Xplantdad it sounds like your sister may be asbergers syndrome person. These are very smart people who actually are mildly autistic and have absolutely no ability to deal with people. They are blind to any nonverbal signals from other people so would not know they were being offensive. I firmly believe that if some one is nasty and miserable I won't have anything to do with them. But generally I believe never blame malice as the motive for behavior. When stupidity vcovers it.
Hi There Michael...my best friends son has Asperger's syndrome and I taught in a special needs classroom for a few years...So I know about Asperger's. :)
Unfortunately, my eldest sister is just mean and ignorant and tries to be controlling...towards my wife and her side of the family for whatever reason. That's okay-when judgment day comes, she will have to answer for her actions. I have no time for her or her drama....but I will NOT deny my daughter the ability to visit with her aunt....so I tolerate her.
Karma has already kinda reared it's ugly head towards her...as my eldest brother (also a doctor of Pharmacy from USC)...who got involved with "recreational" use of medications while still a practicing pharmacist (lost his ability to practice due to and embarrassed my sister, too) is now currently living with her-as he has nothing left to his name.
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I have a SIL, the 'Baby' of Wife's family, that tries to dominate everyone related. Her and her husband wont so much as talk with me if we all are at the same family function. They make me laugh.
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I have a very annoying brother in law who I think has Asperger's so I put up with him cause he don't know better. On the other hand some people are just born bad.
sp mod Cas
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I can't be for certain, at least not for another couple of days but I think the members of the stash house above me moved out under the cloak of darkness. I watched them pack up tonite and leave. Hopefully ALL 8 of them left. Gee, I wonder if it had anything to do with my 4am air drum performance on their walls. I also put in a call to ICE. Next thing I know, they were packing up. :angel;
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Wow PT just wow. Enjoy your peace for now
:cuddle;
Love, Cas
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Take a peaceful Nap, any time you want now. Yea!
Ain't those WalMart disposable phones just great?
On the other hand, they may be just going to spend Easter with the other half of the Family, and will return late next week. Oh NO!
Enjoy your break while it lasts. We never know how long the good times will last.
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Charlie: Unless people like to travel with their clothes washer/dryer and all their furniture, they've moved out. Vamoosed! GONE!! Ahh...It is blissfully quiet here.
Meanwhile, don't know if this is karma but my mother inlaw was just told by her primary that she needs to see a nephrologist. She's the one who told my hubby that "dialysis will be good for you, it cleans your blood!" and when shown a picture of a fistula, said "Oh! That person must have a BAD case of it!". Now, never mind the fact that she's also personally insulted me in the past but the next phase ought to be interesting.
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Karma is well you know. A mean person would fill your mil head with a list of the bad effects of dialysis. Now I wouldn't do that but would enjoy fantasizing about it. The shame is for your mil is that she had the opportunity of gaining a understanding of the world she may be entering but choose not to. I use to work with a woman whose hubby was on dialysis and when it got to her I would listen to her for however long she needed to vent, at the time I had no idea that dialysis was in my future now looking back we both gained she had someone to vent to and I was educated about my future.
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Karma can indeed be a Bitch some times. Regarless of your past relationship with MIL she will need your help as she is in for a tremendous awakening. She will soon learn how she has failed you both for so long and the guilt will be emmense. While it will be great to enjoy some of her suffering, forgiveness and understanding may be your better path. This may not be easy for either of you.
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Out of the blue earlier this week I got a long voice mail from an in-law apologizing to me and begging that I call. Wow. I am not use to people apologizing to me. But it sat right with me. I said "fine, I am going to call him" and I did. He said it made his day. Made my day too. Like a burden being lifted from my shoulders. Perhaps now we can move on and have a normal relationship. I was touched. This feels good. Finally.
The morning didn't start out too good tho...had to do battle again with the insurance company. They are a real piece of work. Insidious sneaky devils but in this case today, I dealt with an ignoramus. She gave me conflicting information and I told her that was not what the office said. She said "Well, you can have them call me". Uh-oh...wrong person to tell that to because that is exactly what I had them do. I had her company office call her. In fact, they put me on-hold while they called HER and straightened her out. By afternoon, the mess was no more and I had won a small battle! That felt goood! :P
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TWO notable successes in the same week! Things are looking up.
Some small celebration may be in order. Keep it to a low roar and stay out of jail.
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I am so glad things are looking up, PrimeTimer!
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I am so happy that your in-law called and that the two of you were able to talk. Could you tell us more about what exactly this person apologized to you for? Could you tell us more about your conversation? If you want to keep that private, I'd certainly understand! Anyway, I am very glad that you are feeling a bit better!
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I am so happy that your in-law called and that the two of you were able to talk. Could you tell us more about what exactly this person apologized to you for? Could you tell us more about your conversation? If you want to keep that private, I'd certainly understand! Anyway, I am very glad that you are feeling a bit better!
My father in-law had no idea what he had done/said to offend me but apologized for "whatever it was". I decided not to go into details with him because after spending the last few years already trying to explain to him, I figured he'd still probably not "get it". Nonetheless, hearing his apology meant a lot to me. Even tho he didn't know what it was that he had done/said. That's okay tho, I let it go. No one else has bothered to apologize so I give him a lot of credit for that.
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That's good news PT, so glad for you
:cuddle;
Love, Cas
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The win with the insurance company rep was outstanding but succeeding in improving relations with the in law was even more impressive.
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Glad the FIL said he was sorry AND the insurance company squared away. :yahoo;
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Some men are into fixing and building things. My husband is not. I found that out back when we still had the house. We had to sell it after we both were laid off from our jobs but have found apartment life to be easier. Sometimes. They don't always fix things around here so we plan to find a better place when our lease is up. Hubby says to me, "we should get a house". I say, "Are you @#$% kidding me?!" >:( No kidding, I remember wanting some shelves put up at the house and him telling me to go pick some out and he'd put them up. Three years went by. Another time...I kept telling him of a water leak from the ceiling. A good year went by. Contractors found a hole big enough to crawl thru. I've got a few of these stories but to make it short, I do not want another house!
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I have 3 sisters.Two of them do not know how to deal with my kidney failure. The third is a nurse and is fascinated by it and has said she would learn the process. We do home hemo.
I call each of them every week just to keep lines open (I have lots of time connected to the machine). The nurse spent 30 years in Europe and has not yet gotten used to the fact that it is so easy to call in the states.
I think I do this more becasue I think my mother would be pleased.
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Some men are into fixing and building things.
And many of us are into fixing and building, but don't clean anything (except the dialysis equipment).
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Don't know whether to laugh or cry....we don't always have running water in our current apartment or air conditioning. It is 80 degrees inside tonite and that is the coolest they can get it to run. Whenever we have put in a work order requesting that they fix things, it takes them anywhere from a day, to a few days or even weeks. And even then things do not get fixed properly. Well, we are finally moving to a new place in a couple of weeks. Had to give our written move out notice and WOW! Suddenly the manager is bending over backwards to get us to stay. Guess having a perfect 5 year payment history talks...Work orders being fixed now the same day we call it in, invite letter to renew our lease with no increase to rent AND 1 month free. lol They are really kissing our arses but nope...too late. Like 5 years too late. We are in a crime-infested complex with drug dealers for neighbors, people leave trash wherever they want and living without consistent running water, plumbing and air conditioning and a snotty office staff is just too much to take anymore. Never did get to meet the manager, they always claimed she was "not in". The manager at the new place was so darn nice and went out of her way and the place was so beautiful that I had to hold back my tears. Didn't want her to see me cry. But I ordered her a small vase of flowers and it made her day....but it was SHE who made OUR day by treating us with respect and common decency. She was so professional and nice that I just felt the need to "pay it forward". And by ordering her some nice flowers, it helped put a little distance between the evilness we've encountered at the old place and the goodness we are already experiencing at the new place. Was sort of like needing to wash away all this sick dark evil stuff over here that we've had to put up with. Best of all, we're getting the most lovely apartment! Thank you hubby, thank you thank you thank you thank you!!! :kiss;
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Just laugh PT you are going to your new appartment.
:yahoo;
Congrats. :thumbup;
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YEEESSSSSSS! I am so excited for you! The place you are in now sounds like a dump and this place sounds like a palace in comparison! I hope you and your hubby have many happy years there!
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I absolutely HATE to move. Too much stuff.
But in your case it sounds like you really have no choice. No one should have to live with conditions less than good.
It soundns like you are making a very well over due change for the better.
Hope the move goes easy and everything makes it safely.
Wife was more than a bit irratated when I failed to pad a piece of furniture and it got a scratch on the lower corner. Ooops!
Did I say I HATE moving?
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You go...PT! Good to hear that you are getting out of the other place. One LESS thing to worry about :)
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There has been a mass exodus at our apartment complex and as my husband put it, it is finally our turn to "blow this popsicle stand". Not sure what I am more afraid of; the neighbors, the staff or the structure. Beside being real nice, the new place is just 2 minutes from hubby's center. We drove and timed it -twice. A 2 minute drive is going to afford him a little more sleep in the morning. We're actually excited about that. Boy, you know you are adjusting to "dialysis life" when you get excited about something like THAT. But we are. :rofl;
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There has been a mass exodus at our apartment complex and as my husband put it, it is finally our turn to "blow this popsicle stand". Not sure what I am more afraid of; the neighbors, the staff or the structure. Beside being real nice, the new place is just 2 minutes from hubby's center. We drove and timed it -twice. A 2 minute drive is going to afford him a little more sleep in the morning. We're actually excited about that. Boy, you know you are adjusting to "dialysis life" when you get excited about something like THAT. But we are. :rofl;
:2thumbsup; :bandance; :2thumbsup; :bandance; :2thumbsup;
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:rant; You all know the calls. The ones you (or your spouse with ESRD get when someone hasn't heard from you in a while. More like you haven't responded to their political cartoon emails in a while so they call you on the telephone instead to ask "how are things? "have you been getting our email?" and to add 'that perhaps the 2 of you should go golfing sometime". Then nothing. For 12 months. Just dead air space and political cartoons emailed at various times of the week. And still no tee-time. Do they make these phone calls just to check to see if you're still alive? And what if you aren't? Then what do they do (or who do they call)? I mean, they are obviously not interested in knowing your day-to-day stuff. They just think it their duty to check and slide a mirror under your nose to see if you are still breathing. The rest of the year you are free from their curiosity. Do they return to their office to announce "yep! He's still alive!" And then what? Anybody care? Those that care are the ones that follow thru with their promises. But the ones doing the annual breath-check are about as appreciated as those scam calls we get for fake charities. :rant;