The Caregivers' Guilt Dumpster - Open for business

@anital2025
I became my husband’s caregiver gradually over the last 9 years. It all started with a spinal cord tumor that was resolved with surgery. Even once he was no longer bed-bound, his mindset & personality was 180 degrees from the gentle, loving, godly man I had married and known for decades. He had become introverted, self-centered, arrogant, and entitled. He refused to do anything he didn’t want to do, including feeding and hydrating himself while I was at work.
Now, COPD and chronic pain due to degenerating spinal discs/severe arthritis is his life. (We’ve been through 3 heart attacks, 2 stents, and kidney cancer since 2012.) He sleeps for days at a time, not even eating. The doctors have no reason for the sudden and lingering fatigue. When he is asleep, he wants me to stay at home. He becomes hostile if he wakes up and I’m not home OR easily found within our home or property. He alternates between being sullen and hateful when he is awake and refusing to do things for himself. “It’s easier for you,” he’ll say. He has become increasingly forgetful. I retired from work last fall so I can go with him to all his appointments to keep him from driving so much. He argues about having to use his hearing aids when he is awake and gets mean if I speak too loud to him. Sometimes, I actually look forward to his days-long naps so the demands and unpleasantness stop for a while.
I wind up getting impatient, feeling tired, hopeless, and even resentful. Like you, I try to adjust my attitude, knowing the impact that my attitude has on things. I have a strong faith and a good prayer life. I retired from work last fall so I can attend all of medical appointments with him to keep him from driving so much. My husband’s hatefulness and verbal cruelty since 2017 (even before he got this ill!) nearly destroyed any love I had for him. But prayer and faith helped me to show him love, patience, and security.
Still, I struggle with the impatience, resentment, and even guilt. I continually monitor my own attitude and make changes in myself whenever I can. It truly is one day at a time, isn’t it?

@mksp Welcome to Mayo Clinic Connect! You are having a seriously difficult time! With your husband’s hatefulness and verbal cruelty, do you feel safe at home? Do you have a therapist just for you? This group is very helpful so I’m sure they will help you with any questions that come up!
And, can I ask how you found Mayo Clinic Connect?

@anital2025
I became my husband’s caregiver gradually over the last 9 years. It all started with a spinal cord tumor that was resolved with surgery. Even once he was no longer bed-bound, his mindset & personality was 180 degrees from the gentle, loving, godly man I had married and known for decades. He had become introverted, self-centered, arrogant, and entitled. He refused to do anything he didn’t want to do, including feeding and hydrating himself while I was at work.
Now, COPD and chronic pain due to degenerating spinal discs/severe arthritis is his life. (We’ve been through 3 heart attacks, 2 stents, and kidney cancer since 2012.) He sleeps for days at a time, not even eating. The doctors have no reason for the sudden and lingering fatigue. When he is asleep, he wants me to stay at home. He becomes hostile if he wakes up and I’m not home OR easily found within our home or property. He alternates between being sullen and hateful when he is awake and refusing to do things for himself. “It’s easier for you,” he’ll say. He has become increasingly forgetful. I retired from work last fall so I can go with him to all his appointments to keep him from driving so much. He argues about having to use his hearing aids when he is awake and gets mean if I speak too loud to him. Sometimes, I actually look forward to his days-long naps so the demands and unpleasantness stop for a while.
I wind up getting impatient, feeling tired, hopeless, and even resentful. Like you, I try to adjust my attitude, knowing the impact that my attitude has on things. I have a strong faith and a good prayer life. I retired from work last fall so I can attend all of medical appointments with him to keep him from driving so much. My husband’s hatefulness and verbal cruelty since 2017 (even before he got this ill!) nearly destroyed any love I had for him. But prayer and faith helped me to show him love, patience, and security.
Still, I struggle with the impatience, resentment, and even guilt. I continually monitor my own attitude and make changes in myself whenever I can. It truly is one day at a time, isn’t it?

Thank you Scott.
What precisely are you guilty about? That you can't make things better? That you don't know how to deal with the cognitive decline behaviors? Nothing is your fault! Nothing is your fault! Your loved one can't help it. Personally, I do not feel any guilt whatsoever. I can't relate to it. What I can relate to is frustration, anger, communication difficulties , and the unknown future. Thank you for listening. I'm trying to be as honest as I can here.

@dianaml
I am relatively new at caregiving, 3 yrs in. I totally relate to your feelings of frustration, anger not at him, but of our situation. My husband has very severe back pain as well as Parkinson’s. Cognitive issues are appearing every day now. He’s just so needy and I work so hard to keep him comfortable, nutrition, med schedules, and doing the activities he enjoys. He is processing things very slowly and I know I need to give him more time to respond and initiate movement. I’m trying to give myself some forgiveness in my frustration about trying to have a normal life. I know he didn’t sign up for this and I didn’t either so I need help in accepting how this life is going to move forward without resentment and loss of hope.

@cath50
Oh how I can relate! Hold on and take care of yourself the best you can. If you are able to leave him alone, take day trips take overnight trips whatever it takes. Thinking of you!