I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: Poppylicious on November 21, 2011, 08:42:05 AM
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I went to Blokey's post-transplant clinic appointment today. It was brilliant because it taught me that he only hears what he wants to hear. All he heard was doom gloom bad biopsy rejection oooh nasty! However, I heard something completely different, namely lots of positivity with a teeny bit of negativity (which wasn't even that bad).
I wish he could focus on the Good and spend less time festering over the Bad, because having to be the one who puts the positive spin on everything is exhausting. Trying to convince him that he needs to be doing other stuff to help himself is like talking to a brick wall. I hate talking on the phone but tomorrow morning when the doc calls with today's lab results I intend to snatch the phone off him and ask some questions of my own. I do realise that he is completely and utterly worried about this little adventure, but sometimes it would be nice if they helped themselves ... wouldn't it?
What follows is a mental image of me trying to talk sense into Blokey ...
:Kit n Stik;
(Thanks for listening!)
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:rofl; :rofl; :rofl;
Hoo Boy! I DO understand! In one of Carl's post Tx visits, I asked how much water he was supposed to drink. He was squeaking by with not nearly enough. The doc said he could drink as much as he wanted....so I asked again what the MINIMUM was he should be drinking....LOL.
I'm so glad I pressed that subject, because Carl would have heard only that he could drink "as much as he wanted" meaning as little as he wanted!
:rofl;
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Aw Poppy....isn't that the nature of the beast though? I swear hubby was like that before ESRD! And he says I push to know TOO much! I say "just the facts!".... Maybe we should have a group :Kit n Stik; :Kit n Stik; :Kit n Stik;
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The doc said he could drink as much as he wanted....so I asked again what the MINIMUM was he should be drinking....LOL.
I'm so glad I pressed that subject, because Carl would have heard only that he could drink "as much as he wanted" meaning as little as he wanted!
Oh, I hadn't even thought about asking what the MINIMUM should be. I am definitely going with Blokey tomorrow now and asking that! I'm actually measuring his fluid intake today (secretly) ... he's had a whopping 850ml. I keep making him drinks and plopping them down in front of him. He tells me not to overload him ... *rolls eyes*. He's particularly unhappy today because the doc phoned and said he would definitely have to have a biopsy (but they can't say when). His creatinine went up by one from 173 to 174. He grumbled about this so I attempted positivity with, 'well if you were in America it wouldn't have even registered as a change!' (in your terms it would have gone from 1.95 to 1.96) but he just grumbled a bit more and put on his sad face.
However much I tell him he should get his arse on here and read about the experiences of others, I'm actually glad he doesn't. It's nice to have somewhere to offload, even though I feel terribly guilty. I do love him, but ... well, you know!
;D
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:rofl;.... INSTEAD OF OUR :grouphug; WE'LL have group :Kit n Stik; :Kit n Stik; :Kit n Stik; :Kit n Stik;
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I don't want to intrude on this thread, but something happened last night that made me think of this conversation in a sort of inverted way. Since it has to do with a sick person and their spouse, I thought I might share it with your, for what it is worth.
I know it is hard to be a spouse of a CKD/ESRD patient; I know it must be a real challenge to stay positive and to keep your sick spouse positive, too. My husband has spent 7 years trying to minimize my concerns and my illness in an effort to buck me up. I can't say that I always appreciated it. Even though I didn't say so, it made me feel like he might be trivializing my situation, ignoring my fears or just denying that something awful was happening to me so that he wouldn't have to face it.
But last night, for the first time, he said that on the way home from work, he thought about how frightened I must be and how just generally horrible and unfair my predicament was. He said he felt really bad about what was happening to me. And you know, THAT is what I wanted to hear. I wanted him to show that he did recognize me and that he did see me. I appreciated being recognized. I appreciated that he didn't just dismiss me.
Sometimes we don't want a cheerleader. Sometimes we just want our spouse to agree that this all sucks bigtime.
Thanks for listening. :2thumbsup;
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Moose, I totally agree with you. My husband has been on D for about 3 years and it has not all been bad,, but it has not all been good either. As a carer I think you tend to gloss over what is a matter with them because there is always some thing to do, some thing to think about, some appointment to make, some hospital appointment to make. Our days are made up of, you could call it trivia but it needs doing. I said to my husband last night that I think he is so brave and focused and he is going through all these crappy things and he never moans or complains, he just gets on with it. I don't think I could. His biggest bug bear is, he can not do the things he used to and it really gets to him.it gets to him that I have to do most things and I can see that really hurts him, not the disease, the not being able to do the manly things..
POPPY .When we visit the neph he always asks him, how he is and he says "I am fine" I have to say no he is not the neph thinks this is funny and we have a crossed conversation. My husband doesn't listen either. Grr men.
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So, Poppy, we are waiting to hear how the appointment went with Blokey! :2thumbsup;
I'm SURE they told him that he needs to drink plenty of fluids.
Now, whether or not he HEARD them is another thing! :rofl;
Aleta
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MM, I have told him that I realise it sucks to be him. Obviously not so flippantly, because that would just be mean. I'm not a constant cheerleader; just a mostly-constant cheerleader.
;D
The thing is, Blokey is very keen to react differently around different people, to the extent that I don't think he realises he does it. He can say anything to his mum and she laps it up and fully agrees with him, without knowing the full facts. He is always so negative when she's around and perhaps it is because she gives him the complete, all-rounded sympathy that I don't. Mum and I are both quite straight. Sympathetic, but reassuring. Always available with huggles and a willing ear, but we won't allow him to wallow if it's not required. I know my husband well enough to know that he needs that, otherwise he gets trapped in a little bubble of misery.
But I will now go downstairs and give him a big huggle and tell him stuff that I think about, just so he knows that I do think about how he must be feeling. I would hate to think that he just thought I was dismissing his feelings.
So, Poppy, we are waiting to hear how the appointment went with Blokey! :2thumbsup;
Haha! Blokey's status on FB today reads:
'Poppylicious attempted to get me in trouble with the doctor today. Unfortunately for her I was right, the doctor agreed and she failed to get me told off. Muhaaaa.'
I wasn't wanting him to get told off! I just wanted to know for my own peace of mind! I asked about the minimum and the doctor said that as long as he's drinking more than when he was on dialysis, and as long as he's drinking when he's thirsty and not ignoring his body, then they're happy.
But I still don't think he's drinking enough. In fact, I'm now off to make him a cup of tea!
;D