Don’t ask how I am, if you don’t really want to know.

@leeleip I know some of what you are going through in several different ways. My maternal grandmother gradually became more and more dependent on my parents as her dementia progressed. I come from a Christian family. My mom was an only child, and all of my grandmother's care fell on my parents. My father was as much of an angel as my mother. There was nothing either one of them would not do for my grandmother. My parents did get some reprieve, in that my sister and myself were going to college, but could assist when available. I can not imagine doing all that my parents did, if I had to do it alone. When my mother succumbed to breast cancer that had metastasized, my husband and I moved in to help take care of her, as my father had already passed. It was something that was a blessing and a curse. Pain and curse for mom, blessing to be there for her. The interesting thing I found, was my friends in college that came to our house to see my parents in action, spoke often after my grandmother died, of how caring and loving they both were. They were a wonderful testimony. I know you need a caring person to talk to. Totally understandable. I just want you to see there may be people who are not speaking up who privately acknowledge your faithfulness. I now have lung cancer and my only son is extremely mad at me. He saw what it takes to care for a terminally ill person. I'm not at that stage, but I understand his feelings. It still hurts. I have been listening to an e-book regarding how awesome God is, and the pastor was quoting scripture on the tongue...how it can be used to bless or curse. As someone else already mentioned, ignore those who speak in ignorance. I would gladly continue a dialog with you whenever you might need to be heard. Anytime. 💕

@sporkandromi
Wow. I have no adequate words. You are walking such a hard road. I relate to all the feelings you described. Sometimes I feel like caregiving is challenging me, testing me in ways I never imagined. Bringing out feelings I would not have believed I would have, and of course want to reject the negative ones! (Nothing violent or abusive or anything, but self-pitying, resentful, offended, shocked, hopeless, etc). When I stop and reflect, and pray about them, I often am led to understand where they are coming from. We are just human after all!

You are carrying a lot at an age that no one expects to be enduring such suffering. It hurts my heart to imagine all that you must endure. I’m glad you posted and I pray you will make encouraging connections here!

@nannybb
Beautiful points you make. Bless you for reaching out to encourage someone else, even as you are walking through pain. I pray for your healing, peace, comfort. I pray that you will have a supernatural awareness of His presence walking with you, loving you and guiding you.

I empathize with this 100%. I am 55 and am my 59 year old husband's carepartner. He has Lewy Body dementia as well as cirrhosis. I also work a full time job, and the people at work are about my only "social" interactions. I'm either at work or at home. I have to be somewhat guarded as far as how much info I let out, as I am the head of my department. People ask all the time, how ya doing? How's your husband? Most of the time I am doing all I can do to not run away, from work, from home, so I struggle with the option of whether to truly answer the question, or do I just saw-fine-he's ok.... I know they are being kind, and likely don't want to hear about it all. No one knows what to say when I tell them all of the harsh realities. And I get that, I've been that person before, but I feel like I always have genuinely listened to people, because if they are actually opening up, it is because they need to. And they aren't necessarily looking for a reply, or advice, they just need to sound off to someone besides the cat or the dog. This is a hard life-everyone here, on this forum is aware of this. I have felt like I am on an island so often. Even my brother, my only family left, and he is my rock-doesn't know what to say. He listens, but I know he is like-holy shit, what do I say. This is the first time I have looked into a support group, so it is my first time posting. I'm not much of a social person, don't have time to be, but maybe we can all be here for each other? We can all sound off and say it like it is, no matter what we are feeling. I have felt so many emotions that make me feel guilty, sad, desperate, hopeless, like life is over. And I feel bad for feeling like that. I feel like I shouldn't be focusing on what I feel, it isn't about me, stop being selfish..... Anyway-I started this off wanting to say that I 100% empathize with your feelings.

@sporkandromi
You, my friend— are NOT being selfish. You are dealing with a very complex and an at times emotionally charged situation by yourself— and, you are maintaining. Thats a lot.
we are in unchartered waters here trying to keep swimming for the person we love— it sounds to me like you are doing a great job.
Of course you have feelings— how could you NOT? but take some time to tale care of you— you need to treat yourself with a little gentleness, because you are doing something very difficult— 🧡

General question for the group. My wife suffered a serious facial/head injury is August 2025 and was hospitalized until the day after Thanksgiving. While she is somewhat improving, I have to be around most of the time to handle daily wound care (feeding tube, trac cleaning and maintenance and cleaning and re-bandaging fer right eye socket which she lost). I also am her only means of transportation for all needs which is pretty much daily. We are trying to build up her strength and coordination and walk for an hour daily. We pay for all required dressings, OTC meds and had to purchase a nebulizer and suction machine for the trac. We have Medicare and so far they have covered the bulk of hospital and doctor visits. Prescriptions are in some cases a big fight. We were fortunate to get long term disability 15 years ago that is designed for a sitter inpatient facility which isn't happening.
My question to the group - does anyone on the thread have a similar situation and if so, what kind of compensation do you receive from your long-term disability insurance company? This is just a general question as I know it won't be that easy.
Comments will be appreciated - thanks