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Author Topic: Irked And Hurt At The Same Time  (Read 16113 times)
PrimeTimer
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« on: April 01, 2017, 10:34:34 PM »

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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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Charlie B53
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« Reply #1 on: April 02, 2017, 03:57:27 AM »


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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cassandra
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When all else fails run in circles, shout loudly

« Reply #2 on: April 02, 2017, 04:53:17 AM »

Families, men don't go there  ;D
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
MooseMom
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« Reply #3 on: April 02, 2017, 09:39:22 AM »

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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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Michael Murphy
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« Reply #4 on: April 02, 2017, 01:42:06 PM »

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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MooseMom
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« Reply #5 on: April 02, 2017, 06:36:28 PM »

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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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
PrimeTimer
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« Reply #6 on: April 02, 2017, 07:29:04 PM »

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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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
PrimeTimer
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« Reply #7 on: April 02, 2017, 07:32:17 PM »

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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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
MooseMom
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« Reply #8 on: April 02, 2017, 08:16:10 PM »

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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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Michael Murphy
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« Reply #9 on: April 02, 2017, 09:46:03 PM »

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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PrimeTimer
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« Reply #10 on: April 03, 2017, 12:06:44 PM »

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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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
MooseMom
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« Reply #11 on: April 03, 2017, 12:24:24 PM »

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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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
MooseMom
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« Reply #12 on: April 03, 2017, 12:25:36 PM »

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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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
smartcookie
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« Reply #13 on: April 03, 2017, 12:59:36 PM »

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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I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
Michael Murphy
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« Reply #14 on: April 03, 2017, 02:10:33 PM »

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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PrimeTimer
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« Reply #15 on: April 03, 2017, 03:37:43 PM »

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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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Michael Murphy
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« Reply #16 on: April 03, 2017, 08:06:27 PM »

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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Charlie B53
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« Reply #17 on: April 04, 2017, 05:52:45 AM »


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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justagirl2325
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« Reply #18 on: April 05, 2017, 05:26:58 AM »

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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PrimeTimer
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« Reply #19 on: April 05, 2017, 11:15:25 AM »

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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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #20 on: April 05, 2017, 12:54:03 PM »

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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My name is Bruce and I am the caregiver for my daughter Holly who is 31 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
MooseMom
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« Reply #21 on: April 05, 2017, 01:27:33 PM »

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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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #22 on: April 05, 2017, 01:28:01 PM »

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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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Michael Murphy
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« Reply #23 on: April 05, 2017, 09:05:06 PM »

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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Charlie B53
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« Reply #24 on: April 06, 2017, 06:51:42 AM »


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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