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Hello there. This is my first post and totally out of character for me to join an online support group but I needed a healthy outlet and I think a discussion with people who understand what it's like to be a caregiver could be just what I need to help me continue to put one foot in front of the other. I'm 45yo and have been happily married to my wife for 8 years. She had a kidney and pancreas transplant in 2008, has anemia, heart failure, and GI issues. If we're in the ER 5 times in a given year, it feels like that's a light year at this point. So, that's my background. In response to your post, I want to say first of all, not to apologize for posting. If you're on this forum that means you care and I think anyone that is a part of the caregiver community already has enough outside factors taking their licks on us that we don't need to do it to ourselves. I think you're incredibly brave for sharing your story and you must have tremendous character for hanging in there and continuing to brush yourself off and get back up. As to the question of communication, I'm not really clear on who the resentful one is in the relationship but from the way you are describing it, it does sound a lot like my household. My wife usually thinks things will get resolved on their own while I am the one that makes sure the laundry is done, makes sure we have a "go" bag prepared, like you mentioned, and it seems like she thinks that everything got taken care of magically, when in reality it takes a lot of time and work to plan everything. I know that this response isn't exactly what you were looking for-you were looking lore for tips or guidance but I think that's kind of the point is that we're all just kind of faking it until we make it. None of us really have.it figured out and I doubt we ever will due to the ever evolving nature of one's situation. But know that you arent alone. The best I can offer is just to continue making the effort and don't stop trying to communicate your feelings and if something is truly important to you, don't be afraid to make it known. Keep hanging in there and celebrate any victory, no matter how small.
Replies to "Hello there. This is my first post and totally out of character for me to join..."
Were we separated at birth? Sure sounds like it. Haaa.
Your words made me do a little self examination. You're so astute in, basically, raising the question, "Who is/has resented who?" My husband has admitted that he used to resent me more than he does today in rejecting some of what we've been/are told and in doing my own research and questioning. But he admits that it has saved his life many, many times. He's told me that he thinks we should have trusted all their medical expertise and diplomas at times. And I suppose I have, and still do, "resent" his inability or unwillingness to talk to "them" more, not to mention talking to me about how it has affected him . . . both physically AND emotionally. So, I admit that I should work on some of that a bit more and realize he's just unable to add another layer of something to what he's already dealing with.
Boy, you sure have been through a lot yourselves! Sounds like you've had to board the same sort of rollercoaster we find our ourselves on sometimes too. Makes me nauseous 🤢.
Things are, thankfully, at a pretty quiet point for us right now with them telling us things look stable, but that's actually what sometimes bothers me more, in a lot of ways. It's sort of like sitting in that seat on the rollercoaster, climbing to the top when you can see how high that next rise is, teetering there, and looking down toward how far a drop awaits you. Thus, the reason why I've decided it's better for me not to even get on that dang thing in the first place anymore. Putting myself somewhere on middle ground, avoiding that "drop", has leveled things out for me.
My husband's medical pattern has usually been things seem to resolve and everything looks stable for a while but then something explodes to set it all on fire again and things get serious. Just when we've started to think everything's okay, something happens and we're back on that dang terrifying ride. I know I'm probably preaching to the choir here but it helps to know that there are those who understand just how scary it is to get aboard that carnival ride. 20 years of all those ups and downs has been horrifying and so horrifying. It's taken such a toll on us both. And because it's seemed, at times, I've been in that little seat on the wildest ride we've ever been on, facing all of it by myself and all it involves, from keeping our lawn trimmed to preparing meals and keeping watch over how and what they're putting into his IV drips at the hospital or chemo clinic, it's just becoming too much for me to think of having to do it again. I've let my own health, at times, suffer because of it, which at 67 now, I simply have had to realize cannot happen any longer. I now realize that I will simply have to set certain limits as to just how much I am able to do. He, too, has had to do the same. He'll be 70 next month and has had to take a look at what course of action he is willing to take if/when we may have to face another health challenge. Hopefully, things have screeched to a dull roar for now. I hope the same is true for you and your wife. Finding this forum, for me, I think will be a place of comfort and support. It certainly has been so far.
THANK YOU!!!
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@schmidty1212 I’m not sure that anyone has welcomed you to Mayo Clinic Connect, but now I have! You’re welcome to have some rants when necessary! Just talking with other caregivers and having helpful suggestions makes the rants disappear! I’m glad you joined the group and hope you’ll like it!