The Caregivers' Guilt Dumpster - Open for business

Babbsjoy - you were reading my mind!
I, too get irritated when I’ve really done my best, not talked harshly, tried to keep a calm look on my face, after I’ve been interrupted for the umpteenth time for another request by my husband who has LBD. Because he is no longer able to operate a TV remote, a cell phone, computer nor read, he is bored, frustrated and lonely. The second issue is that he has microscopic colitis that comes and goes at will. Not only does he have gut issues from the dementia sometimes, but the colitis on its own is dreadful, so we are pretty much stuck at home. It is hard to be everything they need. Actually it’s REALLY hard. And, no one who hasn’t been down this road really knows what it’s like. I don’t even share with friends / family everything - only here. I’m so grateful for the fellow who started this - and I’m really so sad that we have to have it and need it to save some sanity. Peace, Cheryl

@bbams

You're a human being. Of course, with such big plans, this outcome is bound to be disappointing, even with bigger, worse things going on. I think most of us would see ourselves in the context of what was planned vs. what has actually come to pass, and feel some disappointment. As far as helping with house work, I think most of can relate to your frustration. My husband has been a better partner than I ever thought I would find. He has made a real difference in my life. Yet, sometimes the pressure of caring for an adult in failing health, plus keeping up the house, all of the business, all of the errands, laundry, appointments...you name it, seems overwhelming, and we may lose our composure momentarily. Allow yourself your moment, then, do your best to get back on that horse!

Scott and fellow caregivers…I’m right here with you all. When you said “I Do” I’m sure caregivers wasn’t on any of our minds. But I wouldn’t want anyone else taking care of him. Nobody else knows him like I do. I never imagined that I may have to live out my days without him but it seems as it may become reality. But I’m a fighter…Have been all my life. I’ve survived things that people would not believe so I had no choice but to push through and survive. As a child I had no purpose, no one that cared if I was alive or dead. I think I pushed through in search of a reason I was alive. Nowadays I say “I love you” to people that I care about because I was never told that as a child. It’s so important and people don’t realize that when they are raising kids. Anyways I won’t go off on that. When I met my husband I had been divorced twice and raised 2 kids on my own. I feel in love with him feeling as though I deserved to be truly loved for just who I was. He was raised in such a traditional, healthy family that it became so intriguing to me. It had to be a such a wonderful life. I have worked hard to keep that feeling of love in our home. My point of all of this is that I will not let the last leg of his life be anything but the best it can possibly be. He will have all of my love because he deserves it. He has never known anything other than what it is to be loved and respected. He has saved me in so many ways over the years and I will not let him down or be a disappointment. As hard as it may get I will be the strongest wife I can be and I say that with positivity. Love is tougher than anything else.

@cancersucks1953

The sentiments you expressed mirror what I feel for my husband. I agree: Love is stronger than anything else; but I would add that "God is love." No matter how much my spouse saps my energy, I remind myself that he has no control over what he does or does not do or say--and he is and will be until the end (of his physical being) and beyond, a child of God. It's hard to keep this in mind, but all of you at Mayo Clinic Connect inspire me to be what;s left of my "higher self."

Scott and fellow caregivers…I’m right here with you all. When you said “I Do” I’m sure caregivers wasn’t on any of our minds. But I wouldn’t want anyone else taking care of him. Nobody else knows him like I do. I never imagined that I may have to live out my days without him but it seems as it may become reality. But I’m a fighter…Have been all my life. I’ve survived things that people would not believe so I had no choice but to push through and survive. As a child I had no purpose, no one that cared if I was alive or dead. I think I pushed through in search of a reason I was alive. Nowadays I say “I love you” to people that I care about because I was never told that as a child. It’s so important and people don’t realize that when they are raising kids. Anyways I won’t go off on that. When I met my husband I had been divorced twice and raised 2 kids on my own. I feel in love with him feeling as though I deserved to be truly loved for just who I was. He was raised in such a traditional, healthy family that it became so intriguing to me. It had to be a such a wonderful life. I have worked hard to keep that feeling of love in our home. My point of all of this is that I will not let the last leg of his life be anything but the best it can possibly be. He will have all of my love because he deserves it. He has never known anything other than what it is to be loved and respected. He has saved me in so many ways over the years and I will not let him down or be a disappointment. As hard as it may get I will be the strongest wife I can be and I say that with positivity. Love is tougher than anything else.