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need advice....


ginnie

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I need some advice, since I was dx in Sept.05 my husband and I have not really talked much about lc. He seems to have the attitude that I'm just sick and I'll get well, no problem. I'm not sure if he really understands what lc is all about, what to expect, that this is not going to disappear overnight and everything go back to the way it was. Sometimes it's like the big white elephant in the room that no one sees. How do I talk with him about this without making it sound morbid? I don't want him to constantly worry but I need to know he understands what could happen. When I'm upset I don't cry in front of him or my daughter (she is 22), I'm afraid I'll upset them or scare them. I want them to know and be able to talk to me. Right now they don't, my daughter is afraid of upsetting me. My husband is the type that keeps worries inside, doesn't talk about them. How do I help him open up and talk about this?

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Dear Gin,

Reading your Profile, it is apparent that your husband and dauaghter must know this is not the flu that will pass. I don't really have absolute advice here since my own DH and I have discussed it all and even made final 'plans' as well. Maybe you need to open up the subject for discussion. Maybe you need to let them know that you are worried about what will happen. Perhaps they are waiting for the cue from you....that it is okay to voice their worry and concerns as well.

I have no idea here, Gin. I just know how important it is to me that Fred knows my fears, worries, and concerns, as well as the fact that I will fight and plan to beat this, ya know? They may be tiptoeing around since you have not brought up the subject. Let them know it is okay.

Good luck,

Kasey

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I also agree with Kasey. My family was the same as yours. Mom never really talked about what could happen, even as she got sicker, and so neither did any of us, we were all afraid it would upset here. So I really urge you to talk to them and tell them how you are feeling your fears and all, I wish my mom had.

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Ginnie,

I can not speak as a patient, but as my husband's

caregiver. This can be at times a difficult subject for all involved. I used to look for "cracks" in the door and then just kicked it in so to speak. alan and I have had very good talks with this approach. Like Kasey, Alan and I have taken care of everything that needed to be taken care of. Alan's advanced directive and his final arrangments. This allows us to concentrate on living. Alan has even given away some of his personal effects to his children and siblings.

Does the hospital you are receiving treatments at have a staff social worker you could speak to and help give you ideas on how to approach the subject?

I wish I had better advice.

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Gin -

My family was very open about treatment, potential outcomes, etc. It is so special to be able to share the highs and the lows with the ones you love. I agree with everyone else, if you start talking, they may open up. They may be much more aware of the disease then you realize...and may not want to scare you. Does your husband go to the doctor with you? If not, for key appointments, this may be the way to open the door.

Please keep us posted.

Love to all of you,

Holly

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You have to be the one to initiate the conversation. We went through pretty much the same thing--not knowing how to talk about things or approach things. They are waiting for you to start--trust me on this. Just open up your heart and say what you want to say, you will be so glad you did.

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Ginnie, I don't have any advice, but I do offer my support. I know it must feel very lonely to not be able to talk to your family about this. It's a large burden to bear, even more so when you feel like you're doing it alone. I am praying that you and your family will 'connect' and be able to bear it together.

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Ginnie,

Please try to find a way to discuss this with your daughter and husband. My husband and I got the "what if/what are your wishes" out of the way early on....God it was hard! But afterwards, it let us put it away and concentrate on fighting the beast. There are still times I know he has something on his mind, but is not ready to release it. I found by asking him if he has had any dreams lately or telling him of mine, it helps break the barrier.

Will keep you and your family in my prayers.

Mary

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Dear Gin, Your husband needs to know how frightened you are.

Many of us have had creepy nightmares after being dx'd. Husbands and wives often talk in the mornings about what they dreamed about the night before. Maybe you could begin one morning, when you are alone, by sharing with him one of your worst nightmares? Let yourself be weak, let yourself breakdown in front of him so that he can see how much you need his support and compassion.

Love and mercy, Barb

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Hi Ginny,

So so sorry you are in this situation. It is bad enough to be so scared to have this dreaded disease, but you must feel like you are walking on eggs and that is not good. I feel there should be communication between all of you.

It is not good keeping things bottled up inside. It will feel so much better to get it out in the open. They have to know that this will just not go away, it is not the flu.

Maybe if you start the ball rolling it will open up communication.

Good luck with whatever you decide. We are always here for you 24/7

I will send you healing prayers.

Maryanne

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Sounds like your husband may be in a state of denial?

If you've tried to bring it up and he won't talk, you may need to get him to your doctor who will pull his head out of the sand.

Sometimes if the doctor talks to the spouse, they will listen.

Your daughter may well not know what to say or feels like it will go away.

When I was 22 I thought my parents were invincible, that nothing would ever happen to them.

Have you all three gone to the doctor together? When my father was diagnosed, we all went in as a family and got the full story, it helped us all to understand

Good luck

Kathy

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I don't know what to tell you, Ginny. For myself, it seems to upset me very much when someone in the family asks me about my illness. I don't know if that means I am in denial or not, but I just don't like being reminded about it. Sometimes I will say something myself about a doctor visit, etc. But I agree with the rest, if you break the ice, your hubby and family may feel it is acceptable to discuss it with you. Prayers and hugs!

Sharon

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