From super caregiver to compassion fatigue. Has anyone else gone through this transition?

My mom has been gone for 18 months, and my dad for 4+ years, and I'm still wiped out. I hate to say it, but if called upon to help another elderly family member, I'm not sure I could rise to the occasion.

Meanwhile, my husband, who was supportive of my caring for my parents but wasn't hands-on in terms of helping, is trotting around doing Meals on Wheels and working in a food bank and telling me I'd be happier if I did the same.

I'd rather stick pins in my eyes. 😣

I always start out with switching the G word from "guilt" to "grief". You aren't a criminal. You didn't cause this. You can't cure this. You aren't God. You aren't a Saint and that's an awful job description anyway.
When my brother fell ill I remember standing outside his last home (before its sale) and thinking "If you REALLY cared for this man who has been everything to you for your entire life, you would give up your partner, move here, and care for him while he descends from being himself on this long and awful journey through Lewy's Dementia. I think I barely got the thought out from my mind before I knew my limitations in a big way. I was not capable of that.
What I was capable of was to be his POA and Trustee of Trust, help him find a good ALF, help him sell his last home, support him and visit and talk with him about our hopes, our fears, our wishes. HIS fervent wish was that he die before he descend out of his own mind; we both suffer from extreme control; it would have been a misery for him. We agreed we had no choice. We agreed to get through it the best we can.
And now, three years almost after his death, I can admit I am happy he died (sepsis) before he had to lose himself, and be lost to me.
For that is what has happened to you. The one you love is gone. And still it takes/he takes all your thoughts and fears and worries. All your limitations and humanity and inadequacies. All of everything you have and TO NO AVAIL. For in all of this your sacrifices cannot return him to you, cannot restore him to himself.
I honestly think that you are now realizing the limitations. They are real. This is awful, terrible to witness and you witness it every single day. With all the pride you must feel (SHOULD FEEL) for all you have done, you could not save your brother from this, and this is like a living death.
It's grief you feel. It is the most PROFOUND grief and hopelessness, in my humble opinion. If you need grief counseling I would suggest a Licensed Social Worker in private counseling practice because they are the best at life transitions.
And from the bottom of my heart, from any soul I might have, everything in me goes out to you. I once was a loving sister as well. I still am. And I thank whatever gods may be that my brother didn't have to go here, and that I didn't have to witness it. I cannot even begin to imagine this kind of loss.

I shut down for about a year. I had a horrible experience last year that was a trigger. I had a husband die from cancer in 2016 and I grieved for the longest. I got stuck with everything since he died unexpectantly. Even the doctors were baffled about his death.

I went into caregiving a year later, but I only did it for the weekends since I had a full time job that kept me balanced. I went into caregiving full time and I hated every minute of it. I had a horrible person to take care of. Nothing was ever right and finally I had enough of the abuse and left the case. I had been out of work for over a year, and if I had more savings I wouldn't go back now. I don't feel the same after that incident. I think for anybody, this caregiver compassion wears thin on all of us and it is replaced by a numbness that is caused by self-preservation. The body and mind has a way of protecting itself and it shuts down. It is not evil or bad. It is self-preservation.

I cared for mom for four years 24/7. I still suffer from compassion fatigue. I still enjoy my quiet time, my alone time immensely. Perhaps I isolate too much. But four years of 24/7 constant activity completely wore me down. An we are now seven years later, post caregiving.

I did not do enough for myself during that four years. Find a way to do for yourself, get out with people and enjoy life. Now I am struggling with trying to do that. The sub frigid temps here haven't helped and the coffee shop stays closed on Saturday and Sunday! What the heck are they thinking!

Yes, and I've learned that transition is normal. We can sustain "supercharged caregiving" for only so long before our brains do what needs to be done to get us to slow down. And those who fail to slow down often die before the loved one for whom they are caring.

You have nothing to feel guilty about. Yours is called irrational guilt. However, you are very much *grieving* your brother in real time as he declines.

All caregivers go through this. It’s emotionally and physically exhausting! It’s normal to go through these phases.

Please know that you have been an incredible advocate for your brother. You also have a responsibility to protect yourself.

It looks like you have done all that you can. Wishing you peace as you heal from the overwhelming responsibilities of caregiving. Take time for you now. You have earned time off to rest.

My first real job as a teenager was as a lifeguard. One particular tenet will never leave me: The first cardinal rule of lifeguarding is to first save yourself. If you yourself are compromised, or struggling for your own life, you will be little help to someone else. And if you suffer the ultimate loss or incapacitation, they will have no help at all.

Experiencing compassion fatigue can be dangerous for both the caregiver and their LO. Compassion fatigue is beyond burnout. It often occurs when we feel OBLIGATED to care for someone. The danger of compassion fatigue is that we lose our sensitivity to the needs of our LO and neglect our own health. At this point we’ve gone beyond our caregiving limits. And then when we feel obligated and haven’t satisfied that feeling of obligation, guilt sets in. Guilt is a self imposed negative emotion that saps us of our energy.

We did something we shouldn’t have.
We didn’t do something we should have.
We didn’t do enough for someone.
We THOUGHT we should have done more.
Etc., etc.

Being obligated makes you feel that you are compelled to do something… you have no choice. But you can feel responsible for someone’s care w/o feeling obligated. Look back and see all the decisions you’ve made for your brother; all the sacrifices to your own life and all the responsibility for his care you took on. You did the best and are still doing the best you can for him. So forgive yourself (as though it’s that easy to do) and continue your therapy. Try to re-establish the lifestyle you gave up and realize what you are doing now for your brother is enough.

In a ten-year period, I cared for my parents who had various health issues and dementia. At the same time my husband was diagnosed with Parkinson Disease, he suffered, made it to late-stage Parkinson's, began aspirating his food and died of Covid seven months ago.

I had to respond to your post as I along with my children were completely exhausted when my husband passed. I believe now that we are experiencing PTSD as we move forward without him.

Our new normal was always changing, we were always on high alert as we never knew what the day would bring. I too, found myself going through the motions and feeling resentful, as I felt my own physical and mental health decline, (despite running every morning).

Unfortunately, I don't have any answers, except to say that I understand what you are going through. I do think you need to move on with your life.

dear OP,

what an excellent question.

it really comes down to:
how much to give to our LOs vs. how much to give to ourselves. it is very, very hard to do both at the same time. often, one's mind will only focus on 1 or the other. that means, if you focus on your LOs, most likely your own life will suffer.

for some bizarre reason, many of us are much, much more willing to help others, than help ourselves. perhaps in some ways, helping oneself takes even more effort: eat right, exercise, etc., etc., etc., etc., a list of endless things one must do, some of which isn't much fun and so we postpone.

it's really very hard to know what's the right balance:
helping others vs. helping oneself.

but as you pointed out OP, you need to change something. you are an AMAZING sister. and i bet, you're an AMAZING friend, too. now be AMAZING to yourself.

hug!!!!!

bundle of joy :)