Frustrated Beyond Belief

[Cordelia]

My husband (My living donor) is frustrated. He is very stressed at work and it's hard to see me what I'm going through.  He has his bad days too. I think for the last year it's just literally been hell for him watching what I'm going through. The biggest frustration right now is that we are not on the same 'page' so to speak. He doens't understand what I'm going through and I don't understand what he's going through, the stresses of being a caregiver and the primary breadwinner. It's frustrating beyond belief. *sigh

He doesn't have friends like I do, as in he does not have an outside support system like I do. He doesn't WANT to make friends because he's been badly burned in past friendships. I've had the same problem in the past. Heck, I had my own birthmother reject me after having been reunited with her after 30 years of my life. Anyways, that's another long story, I won't get into.....but in a nutshell, I've made and kept friends over the years since my birthmom rejected me back 9 years ago. Yes, its scary taking the plunge, but I've done it. I don't know what I would do without my friends. I'm frustrated for my husband because communicating with others has not been easy for him.

I WISH they had a group for caregivers/living donors to go to vent like I have for those who are on dialysis, and have had transplants. However, I have offered a phone number for him to call where he can talk to others who have "been there done that" with donating a kidney, but he doesn't know if he wants to call the phone number and talk to a complete stranger. *sigh

I know that first step is scary but darn it, I think he's too stubborn to call and just doesn't want to. 

Does anybody have any suggestions here/advice?

[cariad]

Cordelia, you could have your husband try livingdonorsonline.org, Karol also moderates there. My husband, also my living donor, exchanged a few emails with a "donor buddy" and was grateful for the responses.

We also have a caregivers section right here. I imagine that could be awkward with both of you posting personal information about the other, but I know some family members have an agreement to not read each others posts. It would take a lot of trust on both of your parts, but perhaps he could get some relief here.

I apologise for not knowing your story in advance: has he donated already? My husband is in almost exactly the same situation as yours in that he was my donor, would be considered a caregiver (though thankfully I don't need much help anymore) and he is the only one of us earning an income right now. (The lowest income he has made in the US in nearly 10 years, I might add). I would be happy to pass along my husband's contact details. I imagine that would be pretty daunting to contact a perfect stranger, but if your husband ever gets the inclination, he would be welcome to vent to Gwyn. You are in Canada? Gwyn grew up and worked initially in Britain, so he has experience with both our convoluted health system in the US, and socialized medicine, and would understand the frustrations of either.

Hugs to you and your fella. 

[Poppylicious]

Cordelia ... I'm not a man, and I don't have experience of the Canadian way of doing things.  I'm also not the breadwinner, and will shortly have no job at all, but I am soon going to *wave* buh-bye to my left kidney and watch it work its magic in Blokey.  With that in mind, I am available for email venting/getting it off his chest/cheering up if need be.  Send me a PM if you'd like my email address.

The only support I use is that which ihd.com offers me, and I don't feel as though I need anywhere/one else.  There's a small part of me that (as irrational as it sounds) wants nothing at all to do with other living donors.  It's completely ridiculous and I have no understanding of WHY I think in that way. I can't even stand the fuss, which is why I keep it fairly low profile.  I know that once it's over I'll feel differently and every single part of me will want to help and support others going through the process, but perhaps right now it's just too overwhelming for me. However, I do keep an online (fairly anonymous) blog (link below, not that I like to advertise myself (*giggle*) but he might like to read it).  Blokey doesn't use ihd.com at all so I can be pretty honest on here and he doesn't read my blog (to my knowledge) so I can be completely honest on there. 

I hope it all works out for both of you.

*huggles*

[The Noob]

i'll second that. i'm not a man either, or a donor, but am a caregiver. and would happy to extend support via email/phone. i'll bet many here would. it truly takes "one to know one"..

[billybags]

Poppylicious, that is wonderful that you are giving Blokey a kidney, see you do love him.

[MooseMom]

I wonder if he might consider starting his own blog, sort of like the one Poppy has.   That way he can vent, but he can do it into the ether.  I know that sometimes I come onto IHD and just vent, not expecting any replies or advice; sometimes I just need to get it all out of my system.

Personally (and I have said this before), the quest to "understand" is futile.  Unless he has been in exactly your position and you have been in his, neither of you can fully "understand", and trying to do so only wastes energy.  You don't have to be the caregiver and the main breadwinner in order to know that this combination of duties is stressful and to want to do fun things to reduce his anxieties.  He doesn't have to have renal failure to know that it is scary and to want to comfort you and distract you from the fear and illness.  There are people all over who are caregivers for someone and who aren't the ones with cancer or dementia or CKD or whatever, but they DO understand the concept of love and support.

But like others have said, there are plenty of sites like IHD for living donors who would prefer to ask for support anonymously.

[rsudock]

My boyfriend and I are going through the same thing. I am always reaching out looking for support and he is a pretty solitary person. His family is unstable, he's in school, and deals with a sick girlfriend. I think he is so overwhelmed right now that he is shutting everyone out. I am thinking about signing us up for couples counseling and individual counseling.  We are both at a stand still not wanting to say goodbye, but unwilling to move forward. I am sorry you are going through this...I know I am frustrated beyond belief trying to deal with these relationship issues and trying to heal from surgery too....aaggghh!!!!   

xo,
R

[lawphi]

I am/was the caregiver/breadwinner/donor.  My husband and I did therapy and found it to be very helpful and rewarding.   

[Cordelia]

You ALL are SO very sweet!!! Let me start by giving you all a big hug!!!!      Thank you so much for all your offers and suggestions!!   

I will definitely keep your offers of PM"S and emailing in mind, thank you so much!!   

I have given my husband that livingdonorsonline link. I do not know if he has checked it out yet or not, but it would really be right up his alley as he enjoys the internet!! I am hoping that he will connect there!

We have not had surgery yet. We actually don't have a date set yet for my transplant. We're hoping sometine around Jan/Feb.   

This is the most hardest, most difficult thing we have had to endure in our marriage. We've experienced the loss of a pregnancy in the earlier years of our marriage and that was extremely tough, but this I have to admit, has been by far the most challenging in the 16 years of our marriage.

I am doing some reading on chronic illness. I am currently reading a really good book I found at the hospital I dialyze at. It's called "We are not Alone, Learning to Live with Chronic Illness" by Sefra Kobrin Pitzele. It is helping me to gain some insight. I have asked him to read some of it too. Maybe, we could even find the time to read it together, that would be interesting, something we've never done before!!

I realized this week, my husband is grieving. He is grieving the 'loss' of what I used to be. It is very hard for him to accept the 'new me' since dialysis. I know I have changed and he is finding it hard to accept that. He misses the 'old me'

I made an amazing discovery this past week...... For once, I was the strong person between the two of us. I'm usually the one crying on 'his' shoulder. This time, it was role reversal and it was a bit strange for me to be the 'strong' one since I'm usually the one crying on his shoulder. I came to the realization, that I 'can' be the 'strong' one.

What a draining year it has been. I am almost at my "One year anniversary" of dialysis. I'm still learning so much about myself, it truly amazes me.

Thank you all for listening and letting me vent, it really means al ot to me!!   

[MooseMom]

Cordelia, that was a very interesting post, and if you don't mind, I have a few questions.  Please do not feel obligated to answer, and I apologize in advance if I am being intrusive.

What is it, in your opinion, that makes this a harder time in your marriage than the loss of a pregnancy?

What is the biggest difference between the "old you" and the "new you" on dialysis, other than the obvious?  I understand that your physical health is probably not as good, but has there been a fundamental change in your personality?  Has dialysis made you virtually unrecognizable from the "old you"?

What exactly about you has changed?  Sometimes people face difficult times and as a result, experience change, but such change isn't necessarily always bad.  I suspect that strong people become stronger and weak people become more stressed; I wonder if such traumatic events such as dialysis magnify who we already are, but I certainly don't know that for sure.  It's just an observation.

You've said that you've been amazed to discover that you can be "the strong one."   What else have you learned about yourself?

Again, I apologize if my queries are too personal, but I am intensely interested in what you've described in your post.  Thank you for any answers you are comfortable in relating.

[Cordelia]

Hi Moosemom,

Thank you so much for your really sweet compliment   

I really can't put my finger on it, what you asked me, how it has made it harder. We've had major stresses, loss of a job, loss of a pregnancy, loss of a home....I guess I should have said it's a 'different' kind of loss. I can't describe it. You really made me think about that one, and I can't figure it out!   

You are right, my physical health is not as good since renal failure-the obvious like you said is what has changed drastically. My energy is just not there and chronic pain is an everyday struggle with my body, esp my feet and low back pain due to my enlarged left kidney from the cysts.  I personally would not say dialysis has made me totally recognizeable, but that is just my opinion. My husband 'misses' the woman he married years ago and he even can't put his finger on it when I asked him, "what" has changed!? about me.

I have also learned about myself that I do not take anything for granted anymore........I don't get upset over trivial little things like I used to......life is too short to do that I have learned. I have learned that I have become more patient on the whole as a person. Things in life that I got under my skin before just seem so stupid now and it irks me when I see extended family members flying off the deep end over something stupid. I have learned I can be more patient than I thought I ever could.

Thank you so much for being so interested in my post. I hope I was able to answer your questions   

[MooseMom]

No, you haven't been able to answer all of my questions, but that's really beside the point because the questions were more for you, not for me.  I don't need the answers, but maybe you do, and so does your husband.  Just trying to pinpoint and define the "changes" you've experienced will help you to understand them, and maybe that understanding (which will take time) will help you to better cope with what has happened to you.

The "old you" is not necessarily intrinsically better than the "new you".  Sure, it would be nice to be healthy again, but the "new you" can become a stronger and more patient you.  Now, I refuse to allow myself to believe that any great cosmic lesson is to be learned by suffering from a chronic illness.  I'd like to believe that I was an empathetic and patient person before I got sick, but I will admit that, like you, I've gained a patience and tolerance of people that I didn't have in such great quantity before.  If I hear someone speaking rudely or driving aggressively or who seems to be just gormless, I think to myself, "You never know...that person may have just found out that s/he needs dialysis and is really struggling."  I've learned that you never know what hardships people are working their way through, so that allows me to be more gracious.

Chronic pain must be a nightmare to deal with.  I think that if I were in chronic pain, I would find life to be very difficult.  What do you/your docs do or plan to do about your pain?  Lack of energy is not fun, but you can still quietly read or watch a good movie with your husband, and life can still have pleasant moments.  Sometimes I am grateful for being forced to just slow down a bit; that's not a bad thing.  But dealing with pain all the time...that's stressful on just about every level.  I hope you find a remedy for that very soon.  Chronic, relently pain alone saps your energy!

[Cordelia]

I hope in time we will figure it out. Been dialyzing for almost a whole year......maybe its something that will 'pop' up when I least expect it when I'm not 'thinking' about it on purpose.

I hear you on the 'old you' versus 'new you' I told my husband the very same thing. Not every change has been bad. Sometimes, change can ......be good   

Very interesting perspective about the driving that you mentioned. I had never thought of that. You raised a very good point!! 

I am more patient in the sense that I take the time now more often to hold a door open for someone who is struggling. People who are in wheelchairs, I tend to go more out of my way now than ever before to help those in wheelchairs.  See, after renal failure, I did not have the strength to walk very far nor even so much as get up off of sitting on a toilet. I needed that handrail!! I used every wheelchair accessible washroom in public to use the bar!!!

Ugh, I really dislike the chronic pain I suffer with. My feet, my back and my two biggest issues right now. My docs have suggested medication, but with that comes nasty side effects so I figure, why go there? For my back pain.....a nephrectomy is in my future post transplant. Doc won't do it before transplant as he still wants me to keep on peeing for now since I'm still producing urine. I will be reminding him of my severe pain when I speak to him next so he remembers. My left side is swollen from my enlarged left kidney. One can clearly see the swelling on my left side when unclothed. I also have other body pain, most likely arthritis. I just recently had a bone scan this past week which I"m waiting for results on it to determine why my body is in so much pain. I also have a diagnosis of scoliosis which I'm sure has some impact on pain.

You are so right when you say chronic pain zaps a person of engergy!!!

Thanks so much for listening Moosemom