I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: Poppylicious on January 15, 2011, 09:14:24 AM
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As I got into bed last night Blokey turned to me and asked me what the longest was anyone had survived CKD through dialysis alone. Years and years and years! I gushed, because I'd read that somewhere on here. Then the conversation went something like this:
Him: I'm going to die.
Me: We're all going to die.
Him: But I probably won't live to see ... *pause* [I have no idea what he was going to say, or what he was thinking] ... I've been paying into my private pension since I was eighteen [he's mid-thirties now]; I won't even get to enjoy that.
Me: Of course you will! You take care of yourself. Besides, medical research could change things so much in just a short space of time!
Him: Yeh.
Me: I could get hit by a bus tomorrow.
Him: But you won't.
Me: But I might. Or, a tsunami could come crashing through and we'll all drown.
Him: I don't think that will happen.
Me: Oh, okay.
Him: I'm going to die ... *pause* ... I'm going to sleep now.
See, I'm rubbish. My husband suddenly decided to worry about dying and I couldn't come up with anything to console him.
Perhaps it's because I've been constantly worried about him dying since he was first in hospital. I'm resigned to my fate, but I don't want him to be resigned to his. It isn't even as though we haven't talked about his (and my) death before, so I'm struggling to understand where the topic came from so unannounced at such a late hour. Perhaps something happened to someone at dialysis. I don't want to pry.
But I wish I knew what to say to him when he brings it up again.
We went to the pub for lunch today and he enjoyed half a pint of beer (*ssshhh*). That perked him up a bit!
;D
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In your heart of hearts, do you think he might be right?
Long-term survival depends on so many things, Poppy. There are dialysis patients who would be quite fit had it not been for CKD (like me), and those patients probably do better, but there are many, many other patients who have other co-morbidities, ie, other things wrong with them like cardiovascular problems or diabetes or other underlying conditions that have had the end result of renal failure.
I'm sorry that I don't remember all of the details of your Blokey's condition, so I won't hazard a guess. But looking at HIM and seeing HIS situation, do you think he could be right?
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Poppy I know what you mean, but it is me that is scared. I sometimes look at him and you can see he is not very well or I know he is in pain with his legs, he has arthritic knees as well. They will not operate because of his heart and his kidneys.I think I am the one that worries. He wont say any thing to me because he knows that I will worry. Its SHIT isn't it.
What can you say when your husband says that to you, I would have answered the same in your place. I get so tired of chivvying him along but I know I have to do this. Sending you hugs.
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I just want to add one quick thing...I don't know about Blokey, but I know that in my head, the thought of early death is never too far below the surface. That fear is always there. Keeping it hidden from your spouse and friends takes a lot of energy, and sometimes when your energy is depleted, such things rear their ugly heads, and Spousy is left there thinking, "Where did THAT come from?" It's always there...
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Aw Poppy, that sucks. And there's only so much you can say and it sounds like you said it all. Many hugs to you, my friend. :grouphug;
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Poppy , hubby and I have had the same conversation many times!! I usually after a while pass it off jokingly by saying "only the good die young so you're around for a long time yet" LOL. Seriously though it is a topic that I know is constantly on his mind. Every time he gets sick or has to go to the hospital for some test or procedure he thinks he is going to die. He takes really good care of himself but I guess as a dialysis patient it is probably more on their minds than we would think about it.
Poppy I always tell him that part too about I could be killed in an accident tomorrow or just die suddenly. His response is always will if you die I will give up dialysis and be buried the same time. Sad part is I know that he is telling the truth and he would do that!!
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Dear Poppy *huggles* I think you did the best you could in an initimate and confronting/distressing conversation. What more could you say? Nothing really. I don't even think if you parades Zach, Rerun, kitkatz or anyone else we know who has been on dialysis for years and years and thriving to convince someone when they're in that kind of mindset that they're wrong, and who knows maybe he might be right - I mean we ALL know that something can happen at any minute - sometimes without warning of explanation. I don't say that to scare you any more than you probably ar, but it is a fact of kidney failure/dialysis. Doesn't mean the chances are high that it WILL happen (specially since he's a good Blokey and takes care of himself - and yes, I would have the odd drink while on dialysis and I did OK :) ).
If this becomes a theme I'd be more worried about depression. Attitude can definitely affect how your body copes and reacts - and if you think so much something might happen chances are you might find a way, subconsciously, to make it happen.
ALL of us (yes, me too) have considered our own mortality. As others have said it's not always that far from the surface. You guys are in winter, everything outside is dead and cold and it's a time of year no doubt even more when people's thoughts turn darker. Wait till it's spring and he'll probably perk up (I know *I* do..... all those girls back in short skirts.... :rofl; >:D - oops but I digress....
I think you handled things as best you could. If he doesn't dwell on it and continues to do the best he can then I think perhaps it's not so much to worry about it. Like I said above - if it becomes a general theme of conversation then I'd definitely start to worry.
The facts don't support that he'll die anytime soon. He's young, he's relatively healthy (apart from ESRD), he's got a lot to live for (not the least of which being his beautiful wife ;) ) I am not sure if he's on the list or not, but presuming he is then there is definitely that goal to look towards. Like you say medical advances are being made all the times - both in terms of better dialysis and drugs, and also kidney replacement therapies - stem cells, implantable artifical kidneys, etc. It's most definitely not gloom and doom at all.
Hang in there.
btw if you want a real argument to focus him just let him know he can't possibly die because that will open the door for that aussie bloke to come after you..... and he wouldn't want THAT now would he?!?! :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; >:D >:D >:D >:D
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Hey Poppy. My Husband, is One of those, with other, Health Issues. He won't Die, from Dialysis or Kidney Issues, it will be Something else. He does not Discuss, His Health, nor do I, but, I decided, a long time Ago, to get My " Ducks in Order " Money Wise and Emotionally Wise. I know that might sound " Hard " to some People, but even Healthy, People, need to plan ahead. Maybe, just Maybe, He wanted to hear You say, " I will be Okay " Nothing more, just that. It might be a Direction, to take the Conversation, in, if it comes up again. :cuddle;
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My dad died at 28 years old so I have always felt like I was on borrowed time since I passed his age. So I might die tomorrow or 30 years from now, but I am going to hang around as long as I can. The thing I thought of when I read your post is that chronic illness makes you more aware of your mortality, and I think it's an acceptance that most people don't think about. I would say "We have today. We have tomorrow. Let's enjoy it." I'd plan something fun to look forward to. We get so focused on survival we miss living. xoxox :cuddle;
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a big hug to you.
my dad will be 90 in may, he has alzheimers. i once knew a woman who's son's shortest seizure lasted 25 minutes. that's how long it took her to get it to the hospital to have it stopped medically. my daughter tells me i ignore the big blue gorilla in the corner of the room. i say as long as he cleans up after himself he has every right to be there. it may be the pollyanna in me but no matter where you look you can always find someone with problems worse than yours. it's not easy to watch someone you love suffer from whatever. those of us with kidney failure all have our moments. at least your husband had someone to share his with. :guitar:
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In your heart of hearts, do you think he might be right?
Absolutely ... hence my statement about being resigned to my fate (I expect to be widowed at a younger age) and not wanting him to be resigned to his (I want him to enjoy his life, not worry about a possible premature death.)
We DO talk about death a lot. We talk about our funerals. He reminds me who the house insurance is with occasionally! He has said it before, and he has also said in the past that he wants to just give up (I think I've posted about that before.) I think I only posted about it because I was surprised that he sprung such a conversation on me just as we were about to go to sleep, and then ended the conversation so abruptly too.
If this becomes a theme I'd be more worried about depression. Attitude can definitely affect how your body copes and reacts - and if you think so much something might happen chances are you might find a way, subconsciously, to make it happen.
I'm not too worried about him being depressed. He tends to snap out of his melancholy moments almost as quickly as he slips into them, and he doesn't have them often. I suffer from depression myself, so I'm hopeful that I would see signs of it in him, and I don't. The optimist in me likes to think that I'm just his sounding board - if he can externalise his thought processes then I'd rather he talked about it with me than internalised it and let it eat away at him.
We get so focused on survival we miss living.
This reminds me that I heard that statement, 'You shouldn't fear death, you should fear not living' today (I think it was in The Green Hornet, but I might be mistaken) and I like it so much that I might get creative and make something based on it ...
;D
Thank you to everybody for your replies. All advice, support and hugs are truly appreciated!
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:grouphug;
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I totally understand these feelings. I had a sister who was like a mother to me (20 years difference) and she had breast cancer when I was 22. I always felt I would get it, and I did (at 42). Now one brother died at 61 after 10 years on dialysis, and another died of kidney failure at 61 (he tried to avoid dialysis and then it was too late). I will be 61 next Sunday - guess what I am wondering!
We have these thoughts, but we keep on keeping on...
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I have had these thoughts myself. (often) But I can only tell you a little story.... that helps me get through it.
The day my dad passed away (long time ago) The doc phoned us to let us know that it is time and that we should come to the hospital. Me and mom were standing by his bed (very sad)
My dad looked at my mom and with lots of love he said to her not to worry : "I am going to live until I die" He died a few hours later.
Now the lesson that I could found in this is always to rememeber to concentrate on the living part not the die-ing part. The die-ing part takes but a few seconds and it is not under our control but the living part is what is important. I took a vow then that I will "live until I die" and not waste my life die-ing until I finally leave this earth.
Live life to the fullest like someone who is going to live forever... don't spend that precious time die-ing.
I don't know if this is helpfull at all. I wish that you get the wisdom of answering his question the next time the conversation comes up.
:cuddle;
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I worry about the death thing too. A lot. It hits me when I realize that D is life support. I see many people that have lived good, long lives on D. I'm sure they took good care of themselves along the way. It's ok you had nothing to say. The both of you are in this together and it's not something that is of the average couple. Chronic health illness is heavy. the wondering, the thinking, it never goes away.
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I have had these thoughts myself. (often) But I can only tell you a little story.... that helps me get through it.
The day my dad passed away (long time ago) The doc phoned us to let us know that it is time and that we should come to the hospital. Me and mom were standing by his bed (very sad)
My dad looked at my mom and with lots of love he said to her not to worry : "I am going to live until I die" He died a few hours later.
Now the lesson that I could found in this is always to rememeber to concentrate on the living part not the die-ing part. The die-ing part takes but a few seconds and it is not under our control but the living part is what is important. I took a vow then that I will "live until I die" and not waste my life die-ing until I finally leave this earth.
Live life to the fullest like someone who is going to live forever... don't spend that precious time die-ing.
I don't know if this is helpfull at all. I wish that you get the wisdom of answering his question the next time the conversation comes up.
:cuddle;
Des, that is the most beautiful thing I have read in a long time and it brought tears to my eyes. You are a sweetie for sharing this. :grouphug;
Aleta
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Willow, you're highlighted quote reminds me of the attitude Elizabeth Edwards until the very end. She wrote often during her illness up until the very end.
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I have had these thoughts myself. (often) But I can only tell you a little story.... that helps me get through it.
The day my dad passed away (long time ago) The doc phoned us to let us know that it is time and that we should come to the hospital. Me and mom were standing by his bed (very sad)
My dad looked at my mom and with lots of love he said to her not to worry : "I am going to live until I die" He died a few hours later.
Now the lesson that I could found in this is always to rememeber to concentrate on the living part not the die-ing part. The die-ing part takes but a few seconds and it is not under our control but the living part is what is important. I took a vow then that I will "live until I die" and not waste my life die-ing until I finally leave this earth.
Live life to the fullest like someone who is going to live forever... don't spend that precious time die-ing.
I don't know if this is helpfull at all. I wish that you get the wisdom of answering his question the next time the conversation comes up.
:cuddle;
Des, that is the most beautiful thing I have read in a long time and it brought tears to my eyes. You are a sweetie for sharing this. :grouphug;
Aleta
Big pleasure :cuddle; I hope it helps
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I think what you all are saying is so true = "that" thought is always just below the surface and then I'm always thinking, "what should I do today to make things better for my family when I'm gone?"
I tell my son and my husband I love them all the time because when I'm dead I want those words to still ring in their memories.
I have completely obsessed about my son's education. He had a really rough start in school and I wanted him to have a strong foundation because when I'm gone I want him to continue to find success in school and life. I sent him to a private school which we could absolutely not afford and almost bankrupted us because I know I may not be here to see him grow up and it was that important to me that he get his learning problems taken care of while I'm still here.
I just know I'm going to die young..... I don't say that out loud to anyone because there isn't anyone in my world who could handle hearing it...
Poppy, as hard as that conversation is, your husband believes you are strong enough to have the conversation and being able to say it out loud to you is a huge blessing to him! I don't know if that makes sense. Maybe just being able to say it out loud makes it less true - for sure it makes it less isolating and freightening....
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Death...the grim reaper...the thief in the night...the great equalizer. One thing about it, from the time we are conceived, we are dying. Its just that some of us find Death much quicker than we think. So being chronically or terminally ill, is a huge depressive event on all parties. Poppy, we all know what its like having the 'talk'. Lee, me and Leah set down ever so often and have it. I find it makes it easier to accept, abet it isn't easy at all, but rather like an expectation that we know it will happen, but just not when. Now that Lee is actually himself, he is still having his denial moments, but nothing compared to the 'breakdowns' he was having.
So at the risk of sounding mean, which by no means I am, throw him a 'pity' party. LOL I remember years ago, alot of my friends at the time, got together and threw one for a coworker that was dying from breast cancer. She later told us it was the best thing we could ever done. A few months later she did pass, but we had that one moment in time to remember all the fun we had that day.
Death is a reality we all face whether we face it boldly or fight it ever step of the way. I like looking at it as the next new grand adventure. What really is waiting after we pass? I guess I have to wait in line and see!!! LOL
I am not making light of anything anyone has posted, by any means, but trying to provide a glimmer of laughter in an otherwise depressive and sad situation. Laughter makes the soul lighter and the days brighter. Always look for the lighter things and nurture them so they can grow.
So Poppy the next time you dear fellow brings up dying, just tell him about this playboy standing on his deck beside his penthouse swimming pool. Very young and attractive and a meteor hit him in the chest killing him outright. Talk about a shot in a billion!
Death be not proud, though some have called thee
Mighty and dreadfull, for, thou art not so,
For, those, whom thou think'st, thou dost overthrow,
Die not, poore death, nor yet canst thou kill me.
From rest and sleepe, which but thy pictures bee,
Much pleasure, then from thee, much more must flow,
And soonest our best men with thee doe goe,
Rest of their bones, and soules deliverie.
Thou art slave to Fate, Chance, kings, and desperate men,
And dost with poyson, warre, and sicknesse dwell,
And poppie, or charmes can make us sleepe as well,
And better then thy stroake; why swell'st thou then?
One short sleepe past, wee wake eternally,
And death shall be no more, death, thou shalt die.
-----------------Death Be Not Proud
John Gunther
:grouphug;
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I think you said all that you could say.. :grouphug; Just love him and be there and focus on short term life enjoyments to keep him going...
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John often said to me (when I pop my clogs) (UK term I think) and I always said I bet I will go before you as I have a dicky heart. So I never took him seriously. But over the 3 years of all his illness he did put the house in order everything was put into my name and all documents were put into folders with little notes telling me what to do. Some of these I didn't find until after he died. I often wish I had sat down and talked about death with him as I still have many an answered questions. John didn't die of dialysis he died of a heart attack. If I had known what was round the corner I would of taken one day at a time and made the most of life with John instead of nagging him as to what he should eat or drink. Maybe by doing that I helped to prolong his life!!!! I'm very hesitant about posting this, but maybe it might help.
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Awww, Yvonne! It sounds as though John was so fantastically organised, which must have been somewhat of a blessing. Blokey talks about writing a will and he talks about making a list and he talks about making sure I know who to deal with for this, that and the other ... but it's all talk! He also talks about tidying up his computer desk and emptying the dishwasher but he never seems to get round to those either.
;D
I hope that life is being kind to you Yvonne ... it's lovely when you pop back on and 'see' us. *huggles*
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Hugs to you Yvonne and i can say that 'we' do the best we know. I too do the nagging, AND try like heck to live a life making the most of what we have. When ever i get frustrated over stuff, i remember that tomorrow is not promised. I send you blessings and wishes for peace and some joy in your life. with lots of love ,,, ME :-)
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After my recent illness, and it was by no means life threatening, I created a Funeral File on my computer, for our daughters, outlining our wishes. I felt that would help them organise things when we die. I am not 'ready' to die, but think myself incredibly lucky to have had CKD for most of my life and yet have a wonderful charmed life. I'm happy and content, and often tell my family not to mourn me too much when I go, as we have had such magical times together and that I am fulfilled with my life.
My biggest fear is that hubby might go first - that just must not happen!
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Live each day as if its your last !
thats the doctrine I live by. Life's too short for regrets.
If you want to do something DO IT!
If you love somebody TELL them, LOVE them and never let them forget it!
And take the time to smell the roses ... xxx
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Sugarlump, my life is one whole rose smelling episode. My days are my own and I often 'waste' them doing inane things like - just sitting, listening to the birds, or watching the clouds cross the sky, or following ants taking food back to their nest, or dancing along to my favourite LOUD music, etc, etc. See, a charmed life. (Except at present we are invaded by mice and I am cleaning, cleaning, cleaning! I actually think mice are cute but not in my house!)
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I like the sound of your house :)
A cat would get rid of the mice very quickly ...
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Live each day as if its your last !
thats the doctrine I live by. Life's too short for regrets.
If you want to do something DO IT!
If you love somebody TELL them, LOVE them and never let them forget it!
And take the time to smell the roses ... xxx
:flower;
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I try not to forget this doctrine, even in my darkest moments.
I may have a life tainted by kidney failure but is is also a life that has been touched by incredible love, boundless friendship, four beautiful children, one incredibly loyal dog and I don't have many regrets. I have plans for the future that maybe others would consider reckless but I want to travel and see things and to meet people. I need to repay certain kindnesses. I hope I tell those I love that I love them enough times. You know who you are.
And yes I still smell the roses ...enjoy the stars in the night sky, the feel of the wind in my hair, the touch of my dog's nose against my hand, that wonderful smell of baking bread and most of all, the sight of each new day dawning ...
Life is good x
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A cat would get rid of the mice very quickly ...
Not if it was my cat ... she'd just run away.
;D
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I could hire mine out Smokey is a really good mouser, and will catch baby rabbits and stuff as well!