The Caregivers' Guilt Dumpster - Open for business

@kimne Welcome to Mayo Clinic Connect! I’m glad you found MCC! Do you have any outside help lined up? You and your dad were a team for your mom, now you need a teammate! Call hospice again and ask if they have any aides that you could hire. You deserve it and you need the help!

@amrap It sounds like your siblings with their denials of the disease's progression gives them an emotional excuse not to be involved or help. Sadly for all.

The worst form of guilt…
I have been the lifelong caregiver for my two adult children (in their 30’s) with disabilities. One has a physical disability allowing some government assistance, the other has a disability which prevents gainful employment and is ineligible for government assistance. When my children were young, I accepted the change my life would take. No romantic trips without kids, no empty nest retirement.
This week I was diagnosed with advanced liver disease and feel extreme guilt that I did not prepare them for life without my support. I feel anger that despite regular checkups, early warning signs of my disease went unnoticed and robbed me of the opportunity to slow the progression. I feel guilt that I attributed my tiredness as ‘just aging’ and didn’t advocate harder for testing.
Today I feel the most guilt that my desire to make my children’s lives more comfortable will now feel like a betrayal as I robbed them of the opportunity to figure out and experience life’s ugly problems. I don’t have enough time to help them navigate the transition to whatever their lives will become. That is the worst guilt imaginable.

Why can’t the memory last 5 minutes ? ? I am at my wits end ! Have repeated myself, incessantly ! Worn out !

My husband did not take care of his heath and his cancer spread. He wanted to stop treatment and for a year decide let his body do its own thing. Here we are and the cancer has now grown and he is back at treatment which is giving him 50 chance to live. My guild is not feel as compassionate to him as I once one. I'm angry that took away years of my life by constantly compiling about pain and other body functions and doing nothing about it. He also developed severe anxiety and is finally seeking professional help.
I know I'm not in his shoes so the thought of death is driving him mad. I have tried my hardest to recommend items to help with if pain, most time he denies my help because he is afraid something new will hurt him. I feel like i'm no longer his wife, just a care taker. So there is resentment here. I'm totally exhausted because of the anxiety attacks he has all nigh long keep me up. He won't let me sleep in another room, because he is afraid to be alone. If any of this sound familiar ,please post suggestion to help me through this.

@jenniferkr Thank you for your response. It made me smile. I want to share how throwing that guilt in the dumpster helped me which as a bonus truly helped my Mom. The day I threw away the guilt, it gave me a new perspective and confidence. I decluttered the dining room which had my youngest sister’s stuff strewn about for weeks. I didn’t ask for permission. Gathered it all and tossed it into her bedroom (4 trips) upstairs. That was the first day in weeks that Mom didn’t have an anxiety episode. My sister is not speaking to me which includes no criticism from the sidelines…LOL. I feel NO GUILT. I feel happy for Mom that she didn’t have to suffer another anxiety episode over something she couldn’t verbalize as the cause of her anxiety. I do feel bad that it took me awhile to recognize that any amount of clutter is a trigger for Mom’s anxiety. Moving forward, I will take it as a win and put Mom’s needs ahead of my siblings. Consequences be dam$ed!! Hugs and prayers to all the caregivers/warriors fighting with love and compassion. We are many and we are never alone!!

@amrap I understand and good for you to recognize for your mom. She is the important person in this equation.

@madlydancing Your life sounds so difficult and sad. Do you have someone who will listen to you? A therapist? Someone who will help you figure out ways to prepare your sons and help you prepare yourself? And you need to deal with your anger. Anger at yourself, your situation and your husband. Please think about getting a therapist.

@madlydancing
Oh my goodness! You have quite a difficult situation; my husband also did NOT take care of himself and he’s a retired physician! He knew so I find it difficult to cope with his issues. He had 2 major episodes— EMT— were called and he refused to go to ER; so stroke 3 put him in neuro ICU; anyway—in regards to the anxiety and not allowing you out of his sight; my 90 yr old father did that to my mother after a gallbladder surgery: he would pound on the bathroom door if she was in there and also had night wakings. The dr prescribed low dose Wellbutrin; it helped a lot
though took time to take effect. Best wishes!
Not one moment of my day is pleasant unless my husband is asleep….
Jane in NC

This was helpful to me for sure💯 ty for creating the dumpster. I was just commenting in my Pancreatic Cancer group of my feelings of guilt. Thought it might be a feeling that shouldn't be warranted. Now I feel ok enough to keep going. I always tell my husband of 51 years. ( If it was me you'd do all this too for me) Ty again, & take care .