How do family and friends treat you?

[Cortney75]

It has been a long time since I have posted. Dealt with depression on and off and just have about given up hope of having any support myself.

Then the past few days I have been thinking of reaching out for support to the groups and remembered this board. My husband posts here sometimes, and should be much more a part of it. But that is not why I am here tonight.

I have closed out on all my family and friends that don't understand what I am going through or my husband. So I am just wondering what everyone here as caregivers has done when family or friends just don't understand.

For example, husband went into the hospital with 104 degree fever and I called my Mom crying, needing her. But going to work for 4 hours was more important. Or having her redicule my husband when funds are low to saying he should work more.

Then husbands Aunt who has helped us a few times, that we get lectured that we don't know how to budget our money, when we are busting our butts to make ends meet...between the cost of insurance and medicine and treatment and then all of our bills.

Does everyone all of a sudden think that renal failure is no big thing? That dialysis will keep my husband alive forever?

I am just so heart broken how some people in the family could care so little or even want to help out to make things easier for us.

Sorry i just needed to vent and I knew this is the place I could do it where people would understand. Reading through some of the treating normal, I find it hard to treat my husband normal, but it does not stop me from lashing out at him at times. It is hard to want to do everything around here then I think he is sick, he milks it, as soon as I get on his case about doing something, all of a sudden it always seems like he starts to not feel good. Which I then give in and let him get away with it and then I get depressed further that I have no help and just want to give up.

Sorry just rambling on and on...I love my husband...it is just so hard with everything and feel myself giving up hope.

I would love to have a normal life...Married in April 05 husband dx in July 05...started dialysis Feb 06....feel like I have no life. Hubby will be 33 this year and I will be 34...our normal routine is...get up, go to work, come home from work, dialysis, and then go to bed. Wake up the next day and repeat. Wonder why I am depressed. I am trying to keep my chin up...

Just needed to vent it out.

Thank you all for listening!

[RichardMEL]

Hi Courtney!

I'm sorry things are so difficult for you and you feel like you have little or no understanding from those around you. I wonder if it's a bit of a case of "out of sight, out of mind" - as in your hubby does dialysis every night(or whenever) it keeps him going so it's just part of the routine? And for those around they don't SEE the struggle that involves in terms of dealing with the effects of that (eg: tiredness, being ill etc) and the impact it can have on your lives - not just his ability to work/earn money, but yours and your emotional well being through all of this. I sometimes think my own family have a bit of that going on. They don't see it or really have to deal with it so it sometimes slips their mind. I was reminded of this the other day when my sister started whinging at me about how difficult her life was because she had to work hard and had stress with her job and blah blah.. but hey she was going away for a long weekend with her boyfriend soon but it's awful she has to work so hard this afternoon".. so I just cut her off bluntly and said "Well maybe while you're working hard you can think to yourself 'well at least I don't have to be doing dialysis now'" - and that shut her up and made her think a bit.

Alas I am not sure what to suggest to help because it is so difficult. I wonder maybe if you could get them all together at some point and just explain the stresses on you because of medicare, and the costs of the dialysis, and the impacts on your lives etc - NOT saying you want charity or handouts or anything like that - but you want them to understand it's not that you spend your money unwisely or can't budget or whatever but there's perhaps more going on than they realise, and kidney failure is a very serious disease and treating it isn't simple, and it isn't cheap....

Not sure what else to say. I'm sorry you've been battling depression for so long - but I *am* glad you have reached out to us - it's always good to share even if it's just to get stuff off your chest - that can only be good.

Hang in there, ok? 

[twirl]

sorry about your family - they just don't get it - this is a horrible thing to endure for the person and the spouse -- I have problems with family members and friends and people at church --- and my own son -- when I am too tired to go to church he thinks it is an excuse not to go - not a reason ? -- my own twin sister would not give me a kidney -- money is a big problem -- I had to give up teaching just when the salary got decent- you just have to go on --- we understand and please come here when you need us and remember we need you too

[RichardMEL]

oh by the way it's often the ones you think should understand the most who sometimes don't - or at least don't seem to.

5 years ago I was with this girl we got on well and it everything was going well. I knew about my kidney failure but of course didn't discuss it much until it became pretty likely that dialysis would show up soon. Now the thing here is that her own sister, at that stage, had had not one but TWO transplants and had dealt with dialysis previously. Now you'd think someone in that situation with a family member having to go through all that would be more supportive... Unfortunately I got nothing or rather next to nothing from her. Maybe she just didn't want to deal with it as being too much.. I don't know.. but it really caused problems for us because of all the people I knew she was the one I expected the most to have a little more understanding when I was tired or felt ill or even how big it was the challenges were that I was facing.. and I didn't feel like I had any support from her at all. That was harder than people in my family who really had no idea what the struggle was. They at least wanted to know and be involved. Don't get me wrong that particular woman was in no way a bad or awful person but I certainly felt unsupported.

So unfortunately it's difficult that sometimes the ones closest to us let us down.

[paris]

Cortney, this seems to be something so many struggle with.  My sister in law was visiting last week.  They are very well off and money is no issue.  Last month they took four grandchildren on a Disney cruise and right now they are in Key West.   So, she asked me how many meds I was on.  10? How can you be on 10 medications??  Oh I don't know, maybe because of kidney disease!  And I told her how stressed I get with all the co-pays and how if affects our lives. ( I didn't count the epo shots or infusions.)   People really don't want to hear the details.  They want to tell you you look good and drop it.   I have pulled back from many people.  I need people around me who knows this is serious stuff and isn't going away tomorrow.   Keep coming here and let us help.  We are good at giving support.   Tell us more of your story and let us share your struggles.   We are here for you.    

[monrein]

Cortney, I have no experience at all with your situation because my family and friends are and have been amazing but I certainly know that many of us are not so lucky and it pains me just to think of how it might feel.  Although it isn't the same, I know that, you will just have to join a supportive "family" wherever you can and this is where WE come in.  We know the horror and the neverendingness of ESRD and you are both far too young to be having to do all of this so early in your marriage.  I send you big hugs and really encourage you to come here whenever you need a shoulder or an ear and we'll do our best to offer what we have.   

[paul.karen]

This may come off as harsh but i have been on my own since the age of 16.

I learned early in MY life that i had no one to rely on but myself.
Early on in life people said they would do this and that be here meet me there ect ect. 
Sadly i learned that many times in life people can change there minds or just Forget(eyes rolling).

So since around age 19 i decided to rely on no one but myself.  I am promptly on time when i have meetings.  If i say it i will do it.  This is who i am.  Maybe due from life experiences i dont want to disappoint like i have been disappointed by others.

Thus i rely on no one but myself, and Karen .
I have found out since many many years ago i rarly get disappointed in other people.  Cause i dont rely on them.

I do however like to hear stories like monreins.
Often wondered what a good family life would have been like.
But with that said i am happy with who i am and how i turned out.
Moral. If there is one.  Depend on yourself and your husband. And of course the people here at IHD>
P&K

[kitkatz]

I have no help for you, only a hug   

[aharris2]

Cortney75,

I too am a caregiver and my family absolutely does not understand. They are caught up in what they think is important (perhaps what we all think is important until we confront life and death). I cannot share with them at all. Thank God for IHD! Interestingly, my friends and colleagues from work are much more understanding, especially those who know (and love) Rolando. They ask about him ,whereas my family never does. They know our dialysis schedule! They look forward to seeing and socializing with him.

C75, we're family and support, right here.
 

[del]

I also can basically just rely on myself and of course hubby  . I learned a long time ago that the family I thought was close isn't!!  Or at least they don't want to be to me!!  I am the youngest and I don't think I was ever wanted by my brother and sisters (hint of a little bit of jealousy here).  For years I have not heard from them unless I make contact.   Hubby only has one sister and it is very close to the same situation there.  But we have each other and that is what matters most.

[petey]

Marvin is treated (by my family and by his) like the "baby," the favorite one, the "pick of the litter."  Of course, that started long before dialysis.  He was the "menopause, surprise" baby in his family of six children, so he really is the baby there.  In my family, he's older than my older brother and sister and their respective spouses (he's eight years older than I am, too), but he's always been the favorite there, too.  When he asked my daddy 23 years ago if he could marry me, Daddy said, "Sure, Son.  But if it doesn't work out, don't send Marsha back to Mother and me.  You can come and live with us, but don't send her back!"  My dad calls Marvin 3-4 times EVERY day (we live about 2 hours from them), but rarely asks to talk to me.  I talk to Mom and Daddy about once a week.  My sister (lives 2 hours south of us) talks to Marvin daily -- me, a couple of times a week.  All my work friends constantly ask about him.  He's a popular guy, and everybody loves him.  The people at my parents' church have prayed a special prayer for Marvin every Wednesday night and every Sunday morning for 14 years straight.  We're lucky.  Marvin is very open to talk about dialysis and ESRD to everybody, and all family and friends know what we go through on a daily basis.  Most of the comments I hear are, "I don't know how you and Marvin can continue to do this."  To which, I say, "We didn't get a choice.  We're just doing the best we can with what we have to work with."  Marvin's answer is always, "It might not be easy on either of us, but it beats the alternative."

[kitkatz]

After hubby's accident two and a half years ago, I am asked how he is often by teachers at school? No one wants to know how I am. 



But then one teacher did ask the other day.

[jessup]

I don't have any words of wisdom or advice mate
But remember and know this
You do have a supportive family - it's us here at IHD
We do all care about you both
We will always be here for you both
I wish I could help you two out with your financial burdens
There is nothing more bloody frustrating than having to listen to people who make judgements or statements that are based on nothing but lack of respect and lack of knowledge and lack of compassion
ESRD is life changing

How dare your blood family say what they do
 
F**** em

  a bit blunt but that's who I am
So hang in there mate
 

[The Wife]

It's a good thing we have IHD or so many of us would have to go through this alone. 
 

[willowtreewren]

Courtney,
I'm sorry for the lack of support from your family. My husband has PKD, as did his father. His sister also has it. When my dear husband was placed on the transplant list our daughter immediately got tested to see if she could donate, but she, too, has PKD, only hers affects her liver, too. So, our family is pretty understanding about my husband's condition.

On the other hand, as his care-giver, I sometimes get depressed (my guy is nearly always up-beat). We do NxStage at home and have a similar schedule to yours. I run two businesses, so it is pretty intense. Our schedule is insane since we serve on the boards of three non-profits, too.

My husband is a popular guy, like Marvin in another post. Everybody adores him. So, about a month ago a temporary crown fell off and I had to make a long drive to the dentist to get some glue to glue the darned thing back on. They didn't even offer to do it for me, but as I'm collecting the glue the reception said, "Oh, how's our Carl?" I burst into tears and said, "Carl's fine, but I'm falling apart!"

He really does feel so much better since going on NxStage. He says it is like being 10 years younger.

The point is that we caregivers tend to get forgotten as it is easier for folks to focus on the person who is on dialysis.

Having said all that (and I don't post very much - just spend time reading what others have to say), I find that it is far easier to accept what y lot is in life when I look at how much more difficult it is for others on this list. I applaud the huge amount of courage and grace exhibited in the many threads here.

I thank the day I stumbled upon this site.

I hope you can find some strength from the many wonderful folks here.

Aleta

[willieandwinnie]

Courtney,
I'm sorry for the lack of support from your family. My husband has PKD, as did his father. His sister also has it. When my dear husband was placed on the transplant list our daughter immediately got tested to see if she could donate, but she, too, has PKD, only hers affects her liver, too. So, our family is pretty understanding about my husband's condition.

On the other hand, as his care-giver, I sometimes get depressed (my guy is nearly always up-beat). We do NxStage at home and have a similar schedule to yours. I run two businesses, so it is pretty intense. Our schedule is insane since we serve on the boards of three non-profits, too.

My husband is a popular guy, like Marvin in another post. Everybody adores him. So, about a month ago a temporary crown fell off and I had to make a long drive to the dentist to get some glue to glue the darned thing back on. They didn't even offer to do it for me, but as I'm collecting the glue the reception said, "Oh, how's our Carl?" I burst into tears and said, "Carl's fine, but I'm falling apart!"

He really does feel so much better since going on NxStage. He says it is like being 10 years younger.

The point is that we caregivers tend to get forgotten as it is easier for folks to focus on the person who is on dialysis.

Having said all that (and I don't post very much - just spend time reading what others have to say), I find that it is far easier to accept what y lot is in life when I look at how much more difficult it is for others on this list. I applaud the huge amount of courage and grace exhibited in the many threads here.

I thank the day I stumbled upon this site.

I hope you can find some strength from the many wonderful folks here.

Aleta

You said that just perfect Aleta and Thank You from another caregiver. 

[G-Ma]

Aleta, Petey and ALL caregivers...I always tell every caregiver of any person with any disease...you have got to be good to yourselves..take care of yourselves, be patient with yourselves...yours is NOT an easy lot in life. In my previous marraige I was the caregiver and didn't take care of myself when the signs and symptoms showed up and perhaps could have put this off longer if I had.  In any event, I want you all to know that you are very important to all of us """patients""" or whatever you want to call us, we love you..luckily I have experience or I probably couldn't handle being alone sometimes.  I really don't think many family members have a clue..they want to think of us as being the strong ones, at least that's the case in my family and they just don't want to talk about what I have and so I feel very lonely a lot of the time.......give yourselves a pat on the back and hugs....   

[willowtreewren]

G-ma,
Thanks. One day last week it struck me that I no longer rail against the daily dialysis routine. Not that I really disliked it, but it is a commitment in time (We are NxStage). I willingly became the dialysis partner for my husband. It was a no-brainer. And I've tried to give him a kidney - a perfect match, but my creatinine clearance barely missed the cut-off.

That realization nearly took my breath away. Dialysis is now a normal part of the day. I don't sweat and cuss when the needles resist going in. I just "stick" with it. 

It would be awfully silly to say that I'm not going to get depressed any more. I know there will be those bad days. But it really is the best thing to have found this forum and folks like you. I also realized that it wasn't fair for me to simply log on and read what others have to say.

I'm part of this community and that means sharing support for others as I gain support.

Thanks to you, and thanks to everyone here.
 

Aleta

[petey]

Aleta,
You and Carl sound so much like my Marvin and me.  And, like you, I have "down" moments (sometimes, whole "down" days) when the weight of everything that Marvin must endure -- and that I must endure, too -- seems to be bearing down directly on my spirit.  As I've said on this site before in another thread (or two), ESRD hasn't attacked my body, but it has greatly affected my life.  This is NOT Marvin's disease; it "belongs" to both of us, and both of us must handle it /endure it / survive it together.  That's what we've been trying to do for the past 14 years, and, quite frankly, not a single step of it has been easy to bear.  Marvin, like your Carl, is an up-beat, positive, optimistic guy; he takes it in stride, smiles and laughs a lot, and always, always, always looks for the "silver lining" behind every cloud.  On top of loving Marvin with every fiber of my being, I also admire and envy him, too (for I know if the roles were reversed, I would never have lasted this long and would have quit a long time ago).

I draw a lot of my strength from Marvin.  If he can keep going, so can I.  If he can handle it, so can I.  If he can find something positive in it, so can I (though sometimes I have to look very, very deep to find the positives).  And, I think he draws strength from me, too.  When he's sick or in the hospital or dealing with yet another medical crisis, I kick into "high gear" and that seems to make him feel better about the whole thing.  He says I'm the strong one; I say that he is.

We have a very happy, live-for-the-moment lifestyle.  And, we have a very busy life, too.  I still work full-time (teaching high school English), so I'm working M-F from 7 a.m. until 4 p.m.  Then, we both volunteer in a youth baseball organization as coaches/league leaders.  That takes another 25 or so hours a week.  Then, we both serve on civic boards of directors.  We're raising a six-year-old baby dog (Hop-Sing, a Pug/Peke mix, who brings us much joy and laughter).  Wash clothes, pay the bills, cook supper, cut the grass...whew!  Our lives would be busy enough even if we didn't have to find 3 - 3.5 hours six days out of the week to squeeze in Marvin's home hemo (NxStage) treatments.  There are days when we don't get Marvin on the machine until 10:30 p.m. (which means he comes off at 2 a.m.), and then, I'm up and at school ready for those teen-agers at 7 the next morning.

Now, you may say that Marvin and I need to give something up...but what?  I have to work, so that stays in our schedule.  We have to do the treatments, and, all things considered, home hemo is our choice even though it is time-consuming.  We don't want to send Marvin back in-center.  That stays in the schedule.  The baseball and the other volunteer groups give Marvin such a "purpose" in life and he loves, loves, loves working with the kids.  That stays.  We love to eat; cooking stays.  We can't go around dirty and stinky; the washing of the clothes stays.

I sometimes get tired.  I sometimes get disgusted and fed up.  I sometimes think I'm the hamster running to absolutely nowhere in that wheel.  But...I can't quit.  I can't give up.  I can't let up.  Marvin isn't, so I can't, either.

I very much treasure the relationships I've found here with other caregivers/partners (willieandwinnie is a great one!  love that girl!) because so few other people in my everyday life know what I'm living and dealing with.  Trust me, the other caregivers here know exactly where you are and what you're feeling.  We're there, too.

[willowtreewren]

Oh my goodness, Petey.
Your schedule is even more hectic than ours!!!

I admire your energy. 

We manage to leave school around 2:00 PM most weeks. One week out of 3 we leave in the morning in order to get back around 3:30 and work until 5:30. It's the night meetings that wear me out! This week there are three. LOL!

We do have much in common. Give my best to your Marvin.

Aleta

[TiffanyJean]

Ok I've been tearing up reading this whole post.

To start Courtney I'm sorry that you have no family support, it's hard for people who aren't in the day to day to fully grasp what its like for both you and your husband.

Our daily troubles are much like everyone else that has posted; the medical bills are piling up, the copays on meds are as well. There are days when it just seems like we have no hope of getting ahead. We are very lucky that his mom helps us out as much as she can, which really takes some of the weight off us.

I can very much relate to the alone feelings, I am alone. I'm originally from Sacramento, CA and about 4 years ago took the leap and moved out to Hawaii to be with my then boyfriend (now husband) we were married on November 9, 2007. He was diagnosed on Feb. 23, 2008 - we had only been married for about 3 months; which means for the first year of our marriage we have had to deal with a lot! I've made several acquaintances while living here but no close friends; all my family is in Sacramento I am very close to my mom, and so I talk to her almost everyday. Other than my husband and his mom (all her family is in the mainland, Sacramento mostly) are all that I have here. Their family friends that are here, have always treated me like family, just like with them - but it's not my family, ya know? 

Anyways for about the first year I've had to fight to make my voice heard; his mom's family has always gone to her when Richie is concerned, this was no different - except it is because we are married. It's been the toughest struggle, to keep the information about whats going on correct. I live with him, I see everything that he does, I keep track of all his meds, his appointments, everything. I keep his mom in the loop (he's her only child, but the middle child from his dad  ) unfortunately she sometimes still goes over me, or doesn't include me when she email's questions to our transplant coordinator and doesn't CC me, so I have to request it from Richie. Sorry just her latest infraction....

I'm lucky my husband is just as supportive of me, as I am of him. Our families are as supportive of us as they can be, but like I saw somewhere on here (I think) out of sight out of mind - so I guess we are lucky to have as much support as we do have. Bottom line is I'm really glad to have found IHD, and this bored specifically! It's so great to have other caregivers, who know what the day to day pull your hair out make you scream life that we all live is like.

Thanks for listening 

Tiffany Jean

[willowtreewren]

Hi, Tiffany Jean,

You have been through so much in your first year of marriage. And the good thing is that you are really committed to each other. The trials you have gone through have tested your marriage in ways that many people never experience. And look. You and Richie are still together. 

My husband always says that challenges only make us better people. I hope your dialysis journey continues to help you grow stronger and closer. 

This site is a great place and the family here is so supportive. Even those of us who aren't the dialysis patients have a place here.

I know you must really miss your mom. Have you considered video chats? I try to do that with my granddaughter who lives too far away to see very often. It isn't as great as actually being together, but it is better than just talking.

I find that so many of the IHD family have to deal with greater challenges than I do. I draw strength from their courage and humor. I hope you can too.

 

Aleta