The Caregivers' Guilt Dumpster - Open for business

@jeanadair123
Those outbursts have to be really challenging to deal with. Maybe talk to his doctors about this since it’s so unusual for him? I have read about this being part of the journey for many people unfortunately, so maybe his docs will have med adjustments or other things that can help.
Blessings to you. I am so sorry that you experienced your mom’s suffering and now have such an ordeal with your husband. I see and hear you. You are important!

My husband has Myesthenia Gravis 2019 and Parkinsons 2022. He now falls a LOT and I just cannot stop him, hes a fixer and mechanic by nature and is repeatedly doing risky behavior. Dr. suggests a wheel chair but he's not quite ready and I am getting really cranky, feel like a nag with meds, grooming, lecturing. I just have no patience and I feel really bad now because I just got a 5 night break to travel cross country and do not feel at all refreshed. I need an attitude adjustment, feeling very resentful. It is a second marriage, I was widowed and I have no idea what to expect. I just need to let him do what he wants and accept. I feel badly either way...I now have a real appreciation for what spouses go through in their golden years...I applaud you all.

In my case, struggles with guilt have been lifelong. Being a “black or white” (no gray) sort of person, it’s almost impossible to say I’m doing my best because deep down I know there’s always more I could’ve done.
For example, giving clothes to charity: why not give ALL my clothes except two or three necessary outfits? Or, seventeen frauds of patience don’t compensate for one impatient remark.
One method is, I try to tell myself what I would tell another person asking me for advice or feedback. Invariably, I cut other people WAY more slack than is allowed to myself.
A maxim I’ve shared with many people over the years, caregivers, clients, friends: You did the best you could with the tools you had at the time.
Yet somehow the bar set for myself is higher. “I had MORE tools, I could’ve acquired more tools, I didn’t use enough tools because I was tired/impatient/selfish.
Two years spent in counselling seven years ago, learning the difference between selfish and self care is now a huge, guilt-ridden struggle in my current situation.
Then I feel guilty because my situation is so mild, comparatively.
I join you, Scott, in unloading my dump truck full of guilt into the bottomless dumpster.
Thanks for donating the dumpster!!
🌻

@sunnygardens I understand. I was recently reprimanded by my best friend for saying "I was going to (complete a task) but I was too lazy." She corrected me and said, "You were not too lazy, you were too tired from all the other things you do!" It put a different spin on "You do what you do with whatever (in this case, energy) you have. Now if I can just remember this, I won't waste energy on guilt! You sound like you are doing so much, I wish you peaceful thoughts for yourself too.

@cjme see, I feel like I don’t do a lot because there’s always more to do. Certainly I can’t do what I did 30 or even 20 years ago. But it seems I struggle to manage even the downsized house, gardens, etc. No kids to care for now.
Maybe guilt becomes a wired condition in the brain.
I should research how to rewire that.

I try not to complain about my situation but sometimes I cannot help myself when I am tired and frustrated. I am further frustrated when I get the comment in return "It could be worse". I think to myself, for sure it could be worse but right now it feels pretty bad. That then compounds the feelings of guilt. Reflecting back on the long process.....did I miss doing everything I could for my loved one? I am sure that I did but decisions were made with the knowledge I had at that time.

@jenniferkr , welcome to the forum. I'm sure you did the best you could do with the knowledge you had at the time. That's all any of us can do. This forum is a great place to share experiences and get information from people who have had similar experiences and situations.

@jenniferkr Welcome to Mayo Clinic Connect! I’m glad that you’ve joined this wonderful group of caregivers! They (and now you) share information on every aspect of caregiving.
Is your loved one at home or in a facility?

Thank you, Becky. He is home and hopefully will be able to remain in our home.

@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?