It will be three years next month since I relocated from another state to care for my 78-year-old brother who had a mental breakdown, along with vascular dementia and now ALZ diagnosis. (My profile says I moved last year, but that was two years ago). I am the only living relative, and my brother has multiple health problems in addition to the dementia.
When I first relocated, I was extremely worried about my brother, and I was in "super-caregiver" mode. To say the last three years have been rough would be a huge understatement. I moved my brother from independent living to assisted living to now 24-hour care. I took him out of one nursing home where he was abused during the Covid lockdown and put him in another. I sweated through the Medicaid application process. I've had arguments with doctors and nurses...and on and on. But I rose heroically to every challenge and pretty much put my life on hold because I felt my brother's needs were more important than mine.
Slowly over time, my supercharged caregiving feelings have diminished, and now I'm pretty sure I have compassion fatigue. It's not that I don't care about my brother, and I still believe I did the right thing to relocate; but, my emotions have shut down, almost as a means of self-preservation. I just can't maintain the high level of emotional caring I started with. I feel now I'm just "going through the motions." I interact less and less with nursing home staff except for emergencies, I visit far less than I used to, and I worry less about my brother's declining quality of life. I've started worrying more about my own.
Of course, the rock and the hard place about compassion fatigue is the guilt that creeps in when I feel like "backing off." But I don't know what else to do. I won't make it through the next three years if I don't change something, but the emotional tug-of-war is so hard.
Has anyone else had to manage this emotional battle? What has worked for others?
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. 😣
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 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 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!
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.
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.
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.
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.
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 :)
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