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The Truth and how others want you to sugarcoat things


Nicole-my grief journey

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Nicole-my grief journey

My Mother is going through a serious battle. She’s had two Ileostomy surgeries in one week because she became perforated after the first surgery and then they had to open her back up to take out part of her bowel and a tumor that ulcerated that whole area. And after all of this she still needs aggressive chemo to prolong her life expectancy. That may not be possible if we can’t get her through right now. 3 NG tubes in two weeks, with todays being for nutrition feeding because she is malnutritioned and her wound/ new surgical site has necrosis. Besides all of this being extremely upsetting and critical for her and our immediate family; I feel I am stressed the most and the only one willing (or able) to take in the information the doctors are sharing.

I need to vent that I’m upset because I get asked every day how she is doing by EVERYONE (which is exhausting in itself), but in reality, they are unable to listen to the truth and so I feel like they’re expecting me to sugarcoat things and just want to hear “she’s fine or ok”. I’m happy she is so loved by all, but they are making an impossible situation harder on me as the caregiver. I get that we don’t all handle things the same way and I’m cognizant of others feelings and emotions (normally I’m very loving and do want to comfort people), but if they really want to know, or ACTUALLY help her and I; it’s imperative for them to be able to listen to the information. I’m ok with the fact that denial is a protective mechanism, however, at this point, I feel like others (besides my father, because he’s understandably struggling)... need to come out of the fog and actually BE helpful. I’ve clearly expressed what we need over and over again in detail with no one actually doing any of it. It then becomes a time suck and exhausting for me to keep going over something I’m not getting and so I’ve taken a step back with asking.

 I can’t be there 24/7 and I also can’t NOT give the information if they are with her and are asked to make a decision about her care and aren’t fully aware of the circumstances.

This post is mostly about my frustration that I’m the only one taking it all in, with the exception of my amazing sister in law. We are the only two that are in acceptance that things are critical. When I’m not there at the hospital getting maybe 4hours asleep at most, all kinds of mistakes are made. It would make it easier on me emotionally if others would “get” it. Why is there always only ONE of us in the family out there in the world taking the all of the responsibility...I hear that a lot and in my famliy it’s me. Sometimes I feel like: don’t ask me if you don’t really want to know and if it’s just for me to try and comfort you, so that you can have me coax you and then you go about your day ignoring the fact that real, serious things are happening. Ugh...I know I’ll feel ok and kind towards others again after some rest and food because that my baseline nature, but right now I’m in that phase of anger, fear and not wanting to co-sign other peoples Bull-S*** to make them feel better. I actually feel gross about writing something that sounds mean, or negative... But truthfully I’m on empty today and the only person I want to take care of is my Mom. She’s my world. It’s imperative for her to be able to survive and thrive.

Thanks for listening everyone reading this. Usually I’m helpful and more zen, LOL! But tonight...I had to get that out! Now I can move on and be positive when I wake up. Love, kindness, compassion and understanding is the best way to be and I’m going to choose that for tomorrow.

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Dear Nicole,

Please know you can always vent to us. I can relate to so much to what you are saying. I think it is very common for a caregiver to feel this way. Like you said its hard being the responsible one in the family. People seem to just dump on you and that just makes it even harder. I'm glad you have your sister in law for support. Please know we here with you.

Thinking of you. Sending you love and hugs.

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Julie-looking for my peace
My Mother is going through a serious battle. She’s had two Ileostomy surgeries in one week because she became perforated after the first surgery and then they had to open her back up to take out part of her bowel and a tumor that ulcerated that whole area. And after all of this she still needs aggressive chemo to prolong her life expectancy. That may not be possible if we can’t get her through right now. 3 NG tubes in two weeks, with todays being for nutrition feeding because she is malnutritioned and her wound/ new surgical site has necrosis. Besides all of this being extremely upsetting and critical for her and our immediate family; I feel I am stressed the most and the only one willing (or able) to take in the information the doctors are sharing.

I need to vent that I’m upset because I get asked every day how she is doing by EVERYONE (which is exhausting in itself), but in reality, they are unable to listen to the truth and so I feel like they’re expecting me to sugarcoat things and just want to hear “she’s fine or ok”. I’m happy she is so loved by all, but they are making an impossible situation harder on me as the caregiver. I get that we don’t all handle things the same way and I’m cognizant of others feelings and emotions (normally I’m very loving and do want to comfort people), but if they really want to know, or ACTUALLY help her and I; it’s imperative for them to be able to listen to the information. I’m ok with the fact that denial is a protective mechanism, however, at this point, I feel like others (besides my father, because he’s understandably struggling)... need to come out of the fog and actually BE helpful. I’ve clearly expressed what we need over and over again in detail with no one actually doing any of it. It then becomes a time suck and exhausting for me to keep going over something I’m not getting and so I’ve taken a step back with asking.

 I can’t be there 24/7 and I also can’t NOT give the information if they are with her and are asked to make a decision about her care and aren’t fully aware of the circumstances.

This post is mostly about my frustration that I’m the only one taking it all in, with the exception of my amazing sister in law. We are the only two that are in acceptance that things are critical. When I’m not there at the hospital getting maybe 4hours asleep at most, all kinds of mistakes are made. It would make it easier on me emotionally if others would “get” it. Why is there always only ONE of us in the family out there in the world taking the all of the responsibility...I hear that a lot and in my famliy it’s me. Sometimes I feel like: don’t ask me if you don’t really want to know and if it’s just for me to try and comfort you, so that you can have me coax you and then you go about your day ignoring the fact that real, serious things are happening. Ugh...I know I’ll feel ok and kind towards others again after some rest and food because that my baseline nature, but right now I’m in that phase of anger, fear and not wanting to co-sign other peoples Bull-S*** to make them feel better. I actually feel gross about writing something that sounds mean, or negative... But truthfully I’m on empty today and the only person I want to take care of is my Mom. She’s my world. It’s imperative for her to be able to survive and thrive.

Thanks for listening everyone reading this. Usually I’m helpful and more zen, LOL! But tonight...I had to get that out! Now I can move on and be positive when I wake up. Love, kindness, compassion and understanding is the best way to be and I’m going to choose that for tomorrow.

 

Thank you.

I can’t tell you how much it means to read someone capable of putting into words exactly how I feel.

 

Thank you. Down to the feeling bad about saying things like this because you’re not like that usually.

 

Thank you.

 

 

Sent from my iPhone using Grieving.com

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myloss123

Nicole, I feel what you've gone through. When my fiancé, also named Nicole, was finally in a hospital, 2 years fighting cancer after they only gave her a couple months, i had to make hard decisions. Giving that we were together 10 years, but not "legally" married on a piece of paper, it was hard. I had to make a decision about DNR, because she never wanted to be in a vegetative state, but that was a discussion between us. Her mother didn't know and I had to make that decision. Once the rest of the family found out about how bad she was, they all made excuses to back away, or not be present. Her younger sister was the only one that constantly checked in and came to the hospital to see her, even though she just had a child a few months back. I appreciate her for that, and that when Nicole died, i was there, called everyone, and her sister was the only one that showed up, to be there for her and me. 

I understand the feeling of just being there by yourself, everyone giving up or distancing themselves because they don't want to deal with the reality. But in the end, we were there for them, hopefully creating some sort of peace. I know the feeling of sleeping on that weird hospital couch in the same room, being woken up, if you can sleep, by doctors or nurses or cries of pain, feeling like there is nothing you can physically do. I'm glad you had your sister in law involved. It's absolutely devastating doing it by yourself. This coming from someone who puts his life on the line everyday, not knowing if coming back alive or on a stretcher.  Emotional pain and mental anguish are nothing compared to physical pain. Physical goes away, the others just stay, linger...

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