Newbie who needs help

[dawn24]

Hello everyone.  I have been a lurker on this site for about 6 months because my long distance BF is a diabetic who has been in fast decline since this time last year.  I've been making plans to move back so we can be together full time but in the past couple of months he lost his mother (to a chronic illness, COPD) AND found out he's now stage five.  In a couple of weeks he'll be having surgery to insert the catheter for PD.  The problem is he has shut me out of his life and said he just wants to be alone. He hasn't been responding to my texts, emails, or phone calls.  I know he is grieving and severely depressed.  I made a suprise trip to his city in an effort to get him to open up to me and but I couldn't pull him out of his dark place.  He has a loving family but he is so introverted and I'm the only person he has ever expressed his hopes, fears, and sorrows to    Both his family and I were hoping my showing up would help him.  And it did, but only a little.  I was able to get him to smile and laugh a few times, but not much. He even made a couple of jokes.  But mostly our time together was very quiet and sad.  He's a totally different person than a year ago.  He said and did things that really pointed to his deep depression----that he can never have sex again, that he hates what he sees in the mirror everyday.  We even gave him a buzz cut while I was there, and he's always been such a diva about his hair.  When I left he wouldn't say he loved me, wouldn't say goodbye, only "See ya"

I NEED advice on what to do from those of you who are going through this.  I love this man with all my heart and we were building a life together until this happened.  I understand what grief is like, I've lost both my parents and I'm only 38.  So I know what a dark place he is in, and how grief compels you to do some strange things.  Add to that the kidney failure . . . .he said the two reasons for ending our relationship is he just wants to be alone and the fact that I've already experienced so much loss in my life.  There are two reasons I made the surprise visit:  one he wouldn't respond to my questions about if this is REALLY what he wanted, for us to be over.  And two, he finally sent me an email saying that he needs to be alone, he can't let me go down that path, and "he's made up his mind and thinks he going to refuse treatment"  To me that was a call for help, but my visit didn't do any good 

I'm still planning my move down there and his family is going to help me get settled.  I am NOT ready to give up on this man but have no idea how to proceed from here.  I know once the dialysis starts he's going to start feeling better physically and mentally.  In the past he's actually asked me to go to his Dr appts with him when he hit stage four because he knew I'd be able to ask the right questions, etc.  He's had no problem accepting help from me until now.  From the beginning I've totally understood his condition and the toll it takes on him, I don't have any blinders on.  Can those of you who are in the midst of it please tell me how I should proceed?  He's not respondind to any of my messages.  Should I just keep sending them?  Leave him alone until he's been on the dialysis for a while?  Anything else?  I'm at a total loss and very, very worried about him

Any advice would be so greatly appreciated

[Pam]

Lots of  to you Dawn...I really don't know what to say. Once he starts dialysis he will feel better. Is he getting any meds for depression? I think the best thing you can do is just make sure he knows you are there and give him all of the support he needs. I am on dialysis and am a diabetic, I have days when I wish everyone would just let me fade away but those feelings don't last long. He needs time to heal and adjust to the changes dialysis will bring.
This site is full of wonderful people who will be able to give you better advice than I can.
Pam

[billybags]

First of all  to the site. Wow, there is a lot going on with your boyfriend, having diabetes is bad enough but to have the kidney failure as well is not good. He sounds like he is very depressed, which is understandable. He also sounds like he is pushing you away because he loves you and  he doesn't want you to be chained to some one with all these illnesses.He is looking a head and he doesn't like what he sees. He really needs to speak to a councilor, a doctor perhaps, some one who will listen objectively. But he needs to know that it isn't the end of the world to have diabetes and renal failure, lots of people have a good life and can carry on living it. There is so much going on with kidney failure now, transplants for instance, PD is easy to cope with, it doesn't  stop you from getting out and about or even working. You sound like you love him alot.  Advise , I don't know, do you leave him to come to terms with this in his own time or do you keep at him and let him push you further away. I don't know. Please keep coming back and let us know how you go on. Sorry I am not much help.

[dawn24]

He used to say he had ten years left, and when I mentioned that number to him he snorted and said "you're giving me that long?"  No way he'd get counseling, he doesn't even think he's depressed.  I can say that he can never push me so far away that I won't come back when he's ready.  Never. 

[jagermiester]

Dawn,
I'm sorry to hear he is in such a place. I understand the place he is in which is you don't want to die, but you don't know how to live, the pain is too much.  It makes you frustrated and angry though at times when it seems he is making the choice for you about your relationship, like you don't have a say in it.  This is just from my experience and I know everyone deals with things differently, but just keep talking to him.  Keep e-mailing, texting and going to see him.  Just let him know you are there for when he is ready to talk.  Keep the door open and he will walk through when he is ready.  Don't try to push him to talk, that will only make him withdraw some more.  Just "be there".  Even if it is just sitting by him on the sofa for hours in silence without talking.  It's knowing that someone is there which will keep him going and he will talk.....  when he is ready. 

[dawn24]

Thank you, that really helps.  I do know what you mean about just being quiet.  I did that when I was there and it seemed like the right strategy.  It's so difficult knowing what to do being so far away though.  I didn't know whether to keep sending him messages or to back off.  My last message to him was Monday after I got back from my trip down there. I said that I'd never give up on him and that I'd always believe in him.   I think he could possibly be having self esteem issues too. 

As a background we've been friends since high school.  Actually he was my first kiss.  We got together last year when my Dad passed away unexpectedly and he traveled to be with me at the service and after.  Shortly after we started our relationship he was hospitalized for his kidneys and after that he tried pushing me away as well.  But he wasn't nearly as sick then, or as determined to be alone

[jagermiester]

Also, journaling is an awesome tool to help in depressions.  Get him a notebook and let him know it's for his thoughts.  Some days he may only write 3 words, I hate today and others he may write 30 pages.  It seems to really help when you can take all those jumbled thoughts up in the head and put them on paper.  He can even draw, do anything he wants in his journal. 

Just a suggestion.  Prayers lifted.

Thank you, that really helps.  I do know what you mean about just being quiet.  I did that when I was there and it seemed like the right strategy.  It's so difficult knowing what to do being so far away though.  I didn't know whether to keep sending him messages or to back off.  My last message to him was Monday after I got back from my trip down there. I said that I'd never give up on him and that I'd always believe in him.   I think he could possibly be having self esteem issues too. 

As a background we've been friends since high school.  Actually he was my first kiss.  We got together last year when my Dad passed away unexpectedly and he traveled to be with me at the service and after.  Shortly after we started our relationship he was hospitalized for his kidneys and after that he tried pushing me away as well.  But he wasn't nearly as sick then, or as determined to be alone

[Meinuk]

Hi Dawn,

My advice:  Just love him, don't push him, try not to compare who he was with who he is right now, just love him.  That love may change, be prepared for that.  You can educate yourself about CKD, dialysis and depression, but you will never really know what is going on in his head.  He may not really know what is going on in his head for that matter.

If you move, since it was already planned, do it, but don't sacrifice yourself.  Get some counseling for YOU.  Maintain perspective, but still love him.

I will never understand how CKD affects men.  They seem to assign so much importance to their sexual performance (well, I guess that society does too) that they feel their life is over if they can't get aroused physically or have children.  It is a huge thing for them to come to grips with, and many never do.  But you can't come to grips for him, you can just love him, let him know that you are there.

I hope that things work out for you, and I hope that once he settles into a routine of dialysis, his depression evens out.  It is a HUGE life change, one that makes you contemplate your own mortality and your place in this world.  It is probably the biggest hurdle that he will face in his lifetime.  You can't do that for him, but you can stand beside him and let him know that you are there.  Keep living your life, and include him in it.  Don't sacrifice yourself, because if you do, then you both will be lost.

On a happier note, when I was sick, I didn't just push people away, I left.  I went through it all alone.  People who loved me may have worried, but they knew not to intrude.  Slowly, I came back to them, but it took a lot on my part, and on theirs.  BUT, and it is a big BUT, I am a woman, and I am reconciled to my fate.  I never had any dreams or aspirations of a "normal" life.  Kidney disease was not a shock to me.  But I still pulled away anyway. Your boyfriend is in much deeper waters that I ever was. 

Good luck, and I hope that the men of IHD can give you some good insight into what they have experienced.

 

Anna

[dawn24]

Oh, I'd def be moving down there for ME, I've been wanting to move LONG before we started our relationship

The notebook thing gave me an idea . . . I could make him a 'Dialysis sucks' box with little slips of paper so he can write down when he is feeling overwhelmed and put it away in the box.  And something like a 'stabbing doll' or something he could break when he gets frustrated.  Or is that a cheesy idea?

What else do dialysis patients need that they don't think of and then it's a pain to go get?  I'm thinking like along the lines of soothing peppermint for headaches, etc,

[mcclane]

I remember when I was first told my kidneys were shot, and dialysis was the only route to go.

I was depressed, and didn't know what to do so.  Just like your b/f, i wanted to be alone with my thoughts as well; I was worried about working and doing dialysis, traveling, how it will impact my life, diet, finance, ... All those things seem to come up at once.  My wife was very supportive, and said we'd get thru this as a team.  If it wasn't for her, I think I'd still be depressed.

Just provide him with support, but respect his 'space' and alone time as well.  He will get over it, but it may take time for him to figure out what is going on and to develop a system (ie. balancing dialysis and life).

[dawn24]

Thank you.  Sounds like a tricky path . . . give him his space, but let him know I'm 'there'.  I'll do my best, and that's all I can do.  I really, really appreciate the insights from those of you who are going through this 

[MooseMom]

I don't know either your bf or you, but long ago I had a friend who went through tough times, and he reacted in a way that reminds me of your bf.  He pushed people away; he was angry and sad over a loss that was shocking and over which he had no control.  Much later, he told me that he kept pushing people away as a sort of "sorting system", ie, he figured that the people who stuck around were the ones who really cared.  In other words, he was testing them, just daring them to leave.  I'm not sure he realized at the time that he was doing this.  But it makes me wonder if your bf is unconsciously "testing" you, just waiting for you to leave him.  I'm not saying that this is what he is doing, but it is a possibility.

He doesn't know how to find comfort.  I've been there.  My husband asks me, "What can I do to help?", and I invariably reply, "If you can't cure me, then I honestly don't know what anyone can do to really help."  Chronic, dangerous illnesses like ESRD can be very isolating; it's a battle that you really have to face on your own, and it can be a very lonely road.  I find little distractions and small pleasures, but there is no escaping this very, very dark cloud, and it's that lack of an escape route that is so soul-destroying. 

Some people accept their fate, others fight it knowing they cannot win.  I hope your bf finds his way.

[RichardMEL]

Dear Dawn,

Welcome. to IHD.

Second of all: *hugs* 

I don't want to pontificate too much on this topic, as I feel I'm not really qualified experience wise to give anything useful since I've never been in your situation.

Seems to me your bf is seeing death all around him - both literally and emotionally; he's lost a parent to a chronic disease, he has one too and obviously feels now that D is becoming a very real and soon-to-be reality, that he is facing a death too - both from a perceived shorter lifespam (hence the comment about "10 years") and of his lifestyle.

Like you say - deeply depressed - and harder still if he won't recognise it and/or seek counselling and aid.

For what it's worth I kind of agree with the notion to just be there for him. You've pretty much done all you can - with a very sweet surprise visit, and letting him know how you feel. You couldn't do much more even if you were there, and perhaps even make things a bit worse in terms of your relationship by pressuring him (not from your side, but the way he may perceive your caring actions)....

In many ways this is only a situation HE can drag himself out of - either letting time hopefully lessen the impact of the recent death, where grief can perhaps not be so dominant - and perhaps even coming to terms himself with this next phase of kidney diease for him.

I think at this point trying to tell him all the obvious truths that going onto dialysis does NOT mean he's only got 10 years (or much less) to live, or that he can live a relatively full life (specially on PD) and all that. I don't think he's at the point where he's ready to accept those points of view.

Just show your support, and try not to burden him with expectation - by that I mean that HE may feel like he is expected to do this, or that, for you. That kind of thing may push him further into his shell.

Hang in there. You sound like a loving partner trying to do all that you can, and it is wonderful you also have the support of his family. I think though there's only so much you can do - much of it has to come from within.

My fingers crossed that he will at least realise that he needs to seek some help - be it from family/friends/you and/or a professional.

My best wishes in this difficult situation.

[Bajanne]

No advice, just hugs   Your IHD family members have been giving you excellent advice.
Please know that my caring thoughts and prayers are with you two all the way. I admire your tenacity.  I am sure it will pay off.

[Ang]

  Dawn24


  As all above have said.

  maybe things will change for the better when you move , as you will be closer at hand.

   And able to assist heaps more being in the same town
  wish you all the best

[Poppylicious]

  Dawn! 

I'm afraid I have no advice to give you (I think everybody above has done a sterling job with that already) but I will say that you should keep in (daily) contact.  Maybe your messages don't need to mention anything about him or his situation; just a funny or frustrating anecdote from your neck of the woods, the sort of message which clearly doesn't need a response but lets him realise that you're thinking of him, keeping him in the loop and that you want to share EVERYTHING with him.  How fabulous that you (both) have the support from his family.  Obviously I don't know either of you, but with the support from his family I think you'll both come through this.  It will take time, but a little patience works wonders.

*huggles* for both of you.   

[looneytunes]

Hi Dawn and 

Bless you for being there for your bf and wanting to go the distance with him.  Learn all you can about ESRD and the potential challenges he may face.  But, as others have said, he has to come to terms with it himself and really all you can do is be there for him  when he's ready to continue a relationship.   Offering support and friendship may be just what he needs for now. 

You'll be in my thoughts and prayers. 

[phyl1215]

Welcome.....your doing the right things, hang in there an he will be feeling better once he gets on PD and sees he can still do most things he always did especially if he can get on the night cycler in a month.  Good Luck

[Sonarman2]

I need help also. I'm still working on how this site works. Sorry if it seems like I'm using Dawn's thread without regard for her situation, that's certainly not the case. I wish you well. S2

[dawn24]

What an awesome group of people you all are!  It is so valuable to get advice from all of you and I really, really appreciate it.  Thank you.

I did send him a message and a song last night:  Pink F*in Perfect.  And I did say no need to reply, just that I'm there for him if he needs me.

ETA:  I do admit that there are some days I wake up and wonder WHY I am fighting so hard for him and this relationship.  The emotional toll would be a lot less if I just gave up and found my own cave.  But the decsion to fight for 'us' was never even really a consious decsion.  Just something I did . . .

[dawn24]

Finally heard from him last night.  I sent an email about death, where we go, and what we see when we die.  How the will to live is so annoyingly strong and how I understand how tired he is and how he doesn't want to do dialysis and be hooked up to a damn machine every night.  Just so he can get up, go to work, then go home and hook up to it again.   His reply was a jumble of very sad and desperate song lyrics    But at least it was a reply  . . . .

[Meinuk]

Dawn, men are weird that way.  Sometimes communicating through music is the only way that they can communicate.  Don't grasp at straws, and don't read too much into what the words are, just look at it the way that you see it, an attempt at communication.

Just sharing those small things are a good start to reaching him in his darkness. A call every once in a while, a card or letter or package of things that may be interesting, sharing snippets of life.  These are a reminder that he is not his disease, and that life does go on, and that you want him in it. Most of all, let him be a man.  Ask him the same question you would ask him.  Ask him to help with your move, even if it is just stacking books.  Ask him to see a movie with you.  If he doesn't want to go out, then watch a move together at home. don't talk about doctors, dialysis or death unless he brings it up.  But show him that you are comfortable with all of it, and if you aren't comfortable with it, share that too.  If don't know what your life would be like without him in it, tell him. If you are scared, let him comfort you.  Love is a two way street.  If he isn't up to this emotionally now, I hope that he gets to a place in his life where he will be, for your sake.

I was at a PKD function last year when a woman told us her grandfather's secret to a happy marriage (his wife was on dialysis, and he started the PKD Foundation)  He said that when you are married, you have to be able to give 90% to your spouse. Now, on the surface, that sounds pretty intense, but when I really looked at it, I realized that even he was holding something back, that 10% that was his, and his alone. For me, I can live with 10%, as long as the person that I am giving my 90% to shares it with me.

Dawn, I am just cautioning you to keep that 10% for yourself.  It is like an airplane, put on your oxygen mask first.  Loving someone who is depressed is not easy, and it takes an amazing strength not to be consumed by it. 

There is a great thread here called "You know you love a Kidney Patient"  http://ihatedialysis.com/forum/index.php?topic=19386.0

 

Anna

[monrein]

 

[MooseMom]

Very wise reply from Meinuk!

[daveosaurus]

Dawn, I'm going through the same thing your boyfriend is only I don't have anyone to help me. Your boyfriend is very lucky to have you. Even though it may seem like he is pushing you away he really needs you now more than ever. He will start to feel better after a couple of weeks of dialysis, both mentally and physically. Try to get him out of the house for awhile. Go out to eat or see a movie. It will lift his spirits. Above all, bless you and hang in there.