Causes of caregiver burnout and stress. What's your opinion on what really causes fatigue and stress for caregivers?

I was not in any sense a hands on-caregiver. My mom was in Independent Living and later a Nursing Home.

For me, the major stressor was the uncertainty of the situation; never knowing when the next emergency was going to arise and yet knowing that it would be something that I would be completely unknowlegable about and that would require me to drop everything that I was doing, drive 90 minutes to where she was and try to manage whatever crisis had presented itself, googling symptoms and possible diagnoses as I drove and talking to docs and family members until I arrived.

Fortunately, I have a brother and sister in law who were only a couple of minutes away from where mom was, but I was the one who had a modicum of medical knowledge and was needed on site. It was unnerving.

I feel like a never truly relaxed for 6 years. And that, as I say, was not even doing the actual caregiving.

The stressors are when you just cannot shut off your mind trying to meet the needs of loved ones; and the soon to come needs requiring planning and constant vigilance; and the impending emergency sure to come.

I’ve come to the conclusion that for me, the worst stressors are the ones that are similar to things that have stressed me in the past. Rejection by someone important to me, fear of financial ruin, unfair treatment, uncertainty. Perhaps more, I don’t want to think about it really. My guess is that all these things and more can occur in caregiving, and different things push the buttons for different people. The old wounds hurt deeper when something similar happens again. The bad stress would probably depend on one's own past troubles, all made worse by exhaustion.

The little worsening of everything each day. Each day, she's a little weaker; a little frailer; a little more dependent. While taking care of an elderly person and an infant/toddler share some similar qualities in the tasks involved, it is a very different mindset. When you raise children, each day, each week brings just a little more independence - a "light at the end of the tunnel" so to speak; the feeling that someday, you will not need to be giving this day after day hands on treatment as the children grow and are able to do more and more for themselves. Taking care of an elderly, chronically ill, dying person is the exact opposite of that. In the case of elderly caregiving, the "light at the end of the tunnel" is a much different destination. The guilt involved in the feeling that one day I'll be "free" of these tasks, but that means I will have lost my mother.

I used to say I could take the physical care or the mental dysfunction but both of them together was more than anyone should have to bear
The unrelenting sameness of every week with no end in sight
The constant questioning whether I was doing the right thing and the deep remorse when I knew I'd handled something badly
The incredible stress of feeling totally at sea without any references to guide me and knowing that I had the final say but I didn't know what the hell I was doing
The gradual loss of the relationship you once had
The unrelenting neediness
The grief and anger that anyone should come to this in their final years

1. Lack of sleep (I don't do well without it)
2. Watching your loved one decline in front of you, and you know there's nothing you can do about it.
3. Losing your friends, because they just don't understand.
4. Having to now make all the decisions, and having to be the mouth for not only yourself, but your loved one as well.
5. Living the same day over and over.(like the movie Groundhog Day)
6. Having to answer the same questions over and over all day.
7. Not being able to leave your house for any length of time, for some me time.
8. Dealing with incompetent Hospice nurses, who aren't trained to deal with a patient who doesn't die quickly.
9. The anticipatory grief that we as caregivers deal with daily.
10. The anger that ensues from all of the above.

Lack of privacy. Lack of being understood. Lack of being able to make another understand. Lack of any upside on the horizon. This is a long slow slide and the trajectory is unrelenting down. Seeing constant suffering and pain in those we love, seeing them sustain loss after loss and feeling inadequate and limited in addressing the pain and loss of dignity they sustain, unrelenting. Add all of that to being DOG TIRED every single day, with never enough time to do all one can. The lack of understanding and help from other family, from medical community. It is mind-numbing. And the list unending. I have known all my life that I could never never do this heartbreaking care in the home. I have known my limitations. I was a nurse, and there were so many rewards to caring, but it was well paid, not personal, and only for 8 hours a day 4 days a week. I will never understand the kind of heroism it takes to even attempt caregiving in the home.

For me, as an 'empath' I can't just let stuff roll off me. I feel much too much and am too easily bruised and hurt. The fatigue and stress of doing what little CG she'd allow was exhausting--and I was a professional CG!

Spending too much time with mother made me physically and emotionally sick. So many bad backstories and such--we had 6 kids in our family, 4 of us are on antidepressants. One is dead, and he was completely crazy, in the clinical sense.

I have not seen mother for close to 3 months and I have no plans to see her in the near future. She doesn't call and doesn't answer the phone if I do call.

When I realized that spending 4 hours with her, cleaning or something, I would inevitably come home in tears with a raging headache. My therapist has helped me to know that I do not OWE her anything. Just the simply respect due to my parent.

She does not miss me at all. Not one iota.

I think of my 2 kids who live out of state and due to COVID we won't see them this year. My heart ACHES to be able to be with them--and here is my mother, 2 miles away who wouldn't pick up the phone to call me last year when I fought cancer for 8 months. NOT ONE CALL.

Even though she is my mother--I do not feel as if she is my 'mother'. I'm sure a lot of posters will understand this emotion. I'm just self preserving.

Excellent discussion topic.

1. Knowing that whatever decision you make is going to be the wrong one.
2. Never making the elder happy. Nothing is ever enough.
3. Always in fire drill mode. When is the next emergency?
4. Worried you will be pulled away from work, important event, vacation for some emergency.
5. Finding out the emergency you dropped everything for was not in fact an emergency.
6. Worrying they will out live their money.
7. Fixing the same problem over and over
8. Feeling stressed & resentful with all the extra work having them over for a holiday but feeling guilty if you don't have them over.
9. Every holiday or event revolves around their special needs or preferences.
10. Worried you will have to do something that makes you uncomfortable...like bathroom duty.
11. Realizing that even if you are not a hands on caregiver you still think about their needs every day...and that they will never realize/appreciate how much work and effort you put in to make sure they are cared for.
12. Feeling bad that you don't want to be around them.
13. The never ending neediness.
14. How they try to manipulate you to get what they want.
15. Realizing that they sometimes play helpless to create more work for you...and that others never seem to see that.
16. Overall lack of appreciation.
17. Criticism by others who have no idea what they are talking about.
18. Middle of the night phone calls to tell you they fell.

My father passed last month and I thought I would feel relief that he was no longer suffering and I was no longer stressed but that did not happen. Just writing out this list and realizing that I don't have to got to exhausting efforts to make sure my father could be here for the holidays ...I could feel a weight lifted off of me.