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I came upon an article tonight that left me feeling and vividly remembering the worst days of the awful, painful journey with my mother. I have not worked through the decisions I feel most guilty about and tonight it was painfully obvious. I am enormously grateful for this forum; I knew I needed to unburden myself with people I know can understand, and I thought you all. And while there is plenty of blame to go around, I do need to focus on my own troubling feelings that have not lessened even after two years.


My sister and I knew little about dementia when my mother first went to the rehab in her senior living community following two falls, one in which she sustained a fairly small but very painful spinal fracture that had not shown up on the x-ray. My sister and I fought with the docs almost daily to order an MRI, and to adequately medicate her pain. If I could do it all over again, I would have screamed bloody murder, and had her transferred out of there (she had to pay $500 daily for the privilege of being there as it was not a Medicare funded facility). We were swayed by compelling advice to have her stay and be near her doctor at the health center. She was a part of these decisions, and we respected her wishes, though she clearly depended on our guidance.


It was abysmal for her. We finally snuck her some vicodin, as tramadol- and tylenol- was all they would prescribe- even after the MRI confirmed the fracture. We were so naive about so many things, like that we should have been there with her a lot more to ensure she was properly cared for. In addition, decision-making between my sister and me was very problematic. We had a terrible relationship, largely due to her explosivity. We could never resolve things like healthy people because she couldn't or wouldn't or didn't have the interpersonal skills, and because our family dynamic never supported harmonious relationships among siblings. I am the eldest of 3, and I turn 60 tomorrow. My sister is 55. We also have a brother, 59, who has given next to nothing to our mother, or to us, since her decline.


We were due to have a care plan meeting, in her room, with a treatment team and an administrator or two. They stand in a semi-circle several feet from the bed- and the only place for the patient is on or in the bed. It is intrusive and disrespectful and puts the patient in very unequal position.


We were clear we did not want our mother left in the wheelchair for more than an hour, including when she finished her breakfast. PT agreed with this. On their way to the meeting in her room, every single one of those treatment team members passed by my mother, and once assembled in her room, wondered why she wasn't there. She could not go anywhere without assistance, so where could she be? I found her sitting at the breakfast table, finished with her meal, calling for help to get her back to her room to stretch out on the bed. I could hardly believe no one saw her there, or was responsible for getting her to her own meeting. Poor Mom. A day or so later she would throw a plate in order to get someone's attention and help her out of the wheelchair and onto a recliner or the bed.


I haven't gotten to the events I feel worst about, but I've taken up enough of your time for now. I'm hoping others don't mind the length. I don't know that I have told the story in detail, and it helps.

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I've said this before. We all do the best we can with dealing with all of this. But guilt is a demon that has NO place in this if we are doing the best we can with the knowledge we have at the time. Such a learning curve in this that I feel like most of us are not prepared for. "If I only knew" thoughts are just needless and harmful.  Of course, "If we did know we would have done it differently". But we didn't know and have to figure it out as we go as best we can. Where is that darn instruction book anyway? Sheesh.
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I agree with others - you do not have anything to feel guilty about. Please find a way to be at peace with what you were able to do. None of us are perfect and are often thrust into situations where we are learning on the fly. Be kind to yourself - you deserve that.

There's always hindsight, making us see how we could have done things differently or even a little better. That's OK, but don't beat yourself up over it.
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I’m so sorry that you experienced so much pain. You did all you could. You cared. You loved her. She knew that deep down. She would not want you to feel guilty. God bless you.
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This may be somewhat off-topic, but in this case it seems there was too little pain medication, whereas in other posts, it is alleged that hospice overtreated pain and caused, or at least hurried, death. Also, another poster described doctor's orders to end dialysis, and another poster explained that dialysis is not a substitute for kidneys, ultimately it simply does not work and should be discontinued.  Seems that so many times laypeople are confronted with issues that they don't have the education to understand.  Ending dialysis may seem like condemning someone to death, but if it no longer works, why not cease it?  So in fact, a patient may not be pushed into death. Just the natural effect of disease, not negligence, not murder.  I don't think anyone should feel guilty because they themselves are not experts - if they did the best they could, tried to get medical advice, then they are not guilty. We are just human beings and we are not perfect.
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My heart goes out to you. Thank you for sharing and being open in your struggle.

What I hear you say sounds like FALSE guilt. Those thoughts that come through our head after the fact -and accuse us of not being almighty, all knowing, and all powerful in every situation that we have ever faced....especially with regards to a loved one who was in such pain and no one listened.
Golly! That would put anyone through the 'meat grinder' of self-shame and agony. ( Would've, could've, should've is never helpful.)
Whatever you feel most guilt over - doesn't mean that it is Truth.

Repeat to yourself: "I did the BEST that I could with the limited knowledge that I had at THAT time. (You couldn't have done more, or you would have done so.)

Real guilt would be that you simply didn't care, which is NOT true.
The real guilt lies at the facility and with those who made the decisions there - not with you or your family.

So, so agonizing... yet your experience can still sound the alarm for others who may be in a similar situation. Your pain and sharing can still help others find their voice and avoid another similar story.

p.s ... and you certainly do not have to apologize for anything. : )
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Just my opinion, but I don't think you have much to feel guilty about. Hindsight gives us more information, but it is unfair for us to criticize ourselves based on knowledge gained after the fact. It is hard though to not feel like you have been mistreated by those you are paying for treatment and are supposed to be professionals. You sound like a caring child and that in itself likely brought many advantages and comfort to your mom. Unfortunately I don't think any of what you describe is unusual and I have experienced similar. I too am reluctant to come across too critically thinking the staff will just retailiate when nobody is looking. I have spoken to legal counsel and have been told mom's treatment was not considered below standard care. I always thought we need higher standards for what is considered "standard" care. I guess my point is, I don't think you should feel guilty.
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1nephew, very well written post. I don't think you have anything to feel guilty about, from what I've just read anyway. It sounds more to me like the P T staff should feel guilty about the disrespectful, and neglectful care they gave your Mother.

You are only human. You can only control what you can control. Trust me, we've all been there. I could tell you stories but I won't at this time cause I don't want to take away from your post. But believe me when I say that there were times when I really did speak quite harshly to staff that were treating my Mom like she was some kind of imbecile and actually myself as well. I stopped myself from really making a fuss due to the fact that my Mom was in their care and I was afraid anything I said to them may affect the way they treated Mom in the future.

It's very sad that due to understaffing or just plain incompetence we as care givers are left in these vulnerable positions. But please stop feeling guilty. I recognize myself in your post and I know how you feel but don't beat yourself up about things anymore. You sound like you cared a lot and have nothing to be feeling bad about.
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