Maybe we could figure out a way to lessen that to make better choices? Because that seems like no way to make good decisions for the person we love and care for. Based on guilt. Done it myself, by the way.

I have posted this several times; "guilt" is an emotion that should come into play when you've done something wrong.

Regret is the emotion that you feel when the inevitable results on an unfortunate outcome.

To let you know my own particular circumstance. My mom told me over the years that she never, EVER wanted to live on in a demented, incompetent state. She made it very clear to me that I was to not extend her life if she was incapable of making decisions. I think I knew what she meant by that.

However, although she made all 3 of us kids her health care proxies, my brother was her POA. Which actually gave me no power to make decisions on her behalf without his approval.

My mom had a stroke in 2013. She had been dxed with MCI before this and developed Vascular Dementia after the stroke. She ended up in a NH with decent round the clock care. During the time she was in the NH, she received a pacemaker and was treated for pneumonia several times. Had a couple of chest taps due to fluid buildups.

Was this the endgame my mom envisioned? Nope.

When a healthcare crisis occured, my brothers and I discussed, asked mom what she wanted. So the PM got placed.

In the end, mom fell and was injured,, not badly. But appeared to give up. I insisted we call in hospice. They kept her comfortable and she died 3 days later.

Do I feel guilt? Yes, because maybe if we hadn't brought in hospice and their pain relievers, mom would have lived in agony for a couple more days. And either survived or died in pain.  Or maybe, rallied after some days in pain (so, she had aphasia from the stroke, and after late 2013, could not tell us if or when she was in pain; not a good situation).   Someone suggested to me that maybe she was constipated.  Maybe.  But how were we to tell????

At the end of life, there are no "good" choices. There is "the least bad chouce". I have read this over and over again from gerontolgists, both my local folks and from experts line Atul Gawande.

"...thus conscience doth make cowards of us all..."

Guilt is a very useful emotion. It is your conscience asking you to reflect on what you are at and see if there's anything wrong with it; like pain suggesting that next time you might like to warm up before you play tennis, or that sensible people look where they're going and don't walk into the bathroom cabinet sigh...

My personal suspicion is that the painful emotions so many caregivers feel are often incorrectly identified as guilt. People feel bad - this evening, for example, one lady is dreading a trip that she should be looking forward to because she wants to go without her mother - and they assume it's guilt. It usually isn't guilt. It's fear, pain, despair, empathy, injustice, sadness... it's all kinds of complicated things.

And generally, the people who should feel guilt don't at all!

I think my generation was raised on "guilt". I think our parents and others used it to controll or get what they wanted. I was the easiest out of 4 children that Mom could do this to. Maybe because I was the oldest and ended up being the caregiver.

When I complained about what somebody did Mom would say "And what did you do." This is good in some ways but in others I began to look at everything having to be my fault. I "had" to have done something not the other person. So always saying sorry. Its taken a while but now I ask, why don't I feel guilty and feel guilty because I don't. Its not always me. I can't always control a situation. I do what I can the best I can. My siblings have never felt guilt. If my brothers had, they would have seen Mom more. Did more for her. Me, my only guilt is I lacked patience with Mom during her Dementia journey. But I am not a patent person. Otherwise, I was the only one for years. Every Holiday, Mom and Dad day and Birthdays my parents got something from me. Not so with my brothers. All Hospital visits and appts, I was there. So no regrets and very little guilt.

I've found it helpful to really dig down to the fundamentals of what I'm feeling and it usually can be distilled to one or more of anger, sadness, and fear.

We often say we "feel" guilty about something but when you think it through the feeling(s) are anger, sadness and fear. Guilt is more of a conflict between a part of our brain that says "we should do something ( for Mom) " and another part of our brain that that says " that's really going to throw things off balance, you better get prepared for physical pain and mental exhaustion" 

Fear of having to endure physical pain/ mental exhaustion if you go through with it. Sadness of having Mom endure pain if you don't go through with it. Fear of Mom expressing her anger/anguish if you don't go through with it. Anger that nobody seems to notice YOUR pain, including your Mom. The list goes on an on.

The best decisions might be made when we truly dig deep and feel all our emotions and decide which emotions we can tolerate and which ones are pointing to something that is beyond our healthy capacity to manage.

Decisions made out of guilt just don't work They just don't. We all have to do the best we can with our given situations. I finally accepted that. My responsibility is to make sure my mom is taken care of and safe. But I don't necessarily have to provide the care anymore. Let the professionals do what they do. And that's so sad Midkid. And not fair to you, at all. Sometimes parents have their own mental health issues, but that just doesn't make it right for their kids. I feel for you, if that helps at all. And you're so right. YOU are NOT the problem. You just got left holding the bag, as they say. Toss that bag right into the dumpster. I don't mean anything harsh by that. But you deserve peace of mind and happiness. It's your time.  It went how it went. Hope you can move forward from here.

"I think that often what we are really feeling is sorrow, regret and helplessness, coupled with a generous splash of anger..." Yup. Hubby and I are now starting to go through some serious decline with his dad. We went through this with his mom, whose now deceased.

My in-laws could not be more different in how they approach and cope with adversity. Whereas my MIL was valiant and dignified, my FIL is cowardly and undignified. I find that whereas I was willing to give more and more for my MIL, I am quicker to define limits and boundaries with my FIL because I know that he will burden my marriage and burn me out quickly if I let him.

FIL has no qualms about calling at whatever hour of the day to ask another asinine question about Facebook. He lives in independent living where they have a library with computers and staff. He avails himself of none of it because he feels he can just call my husband. And why bother the staff??

FIL has always been tightly coiled and narcissistic. He started throwing pity parties for himself when MIL started showing signs of her neurodegenerative disorder. He was angry that his golden years were never going to happen the way in which he wanted. He fell apart when his wife and sons needed him most; I lost a lot of respect for him.

I feel absolutely zero guilt for the preparations I am starting to make now for him such as informing his doctors that he is not compliant with his medications and touring memory care facilities. Finally his neurologist determined that FIL has dementia!

For me, guilt is a thing of the past. I recognize that I have done nothing wrong and committed no offense. I have done right by my in-laws and I will not be guilted into caregiving because, as you wrote, cwillie, we seldom get "out desired outcome."

Stay strong, fellow caregivers. And may 2019 be a year free from guilt!

Good point, Gershun.

I was RAISED on guilt. Mother would threaten suicide every time she was upset or didn't get what she wanted.

Horrible, horrible way to raise kids. By fear? I used to walk in the house after school and tiptoe down the hall, heart pounding wondering if I'd find my mom dead in her bed.

It's taken 20+ years of therapy to realize I'm NOT the problem. I have nothing to feel guilty ABOUT. All I have done is try to help her have the best life she can. Despite the fact she never did that for me.

I am approaching the point where I can spend short periods of time with her and not come home in tears.

Sure hope I didn't do that to my kids.

I think guilt is a negative way of describing our conscience firing at all cylinders. It's good to have a conscience if it is guiding you to do good but bad if it gets out of control to the point where you are never completely satisfied with yourself knowing that you did the best you could.

So, do the best you can. Period. Then let the chips fall where they may. They're going to anyway. But after you've done your part, it's out of your control.

Oh, so true! Well said.

IMO we are often too quick to label the feelings we have after we make an unpopular/unpleasant decision as guilt. I think that often what we are really feeling is sorrow, regret and helplessness, coupled with a generous splash of anger that the things we have tried to accomplish so valiantly and for so haven't gotten us our desired outcome.

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