I’m the odd one in my family. Black sheep, weirdo, different...I hear it all...am a bit estranged from the whole family. I left as soon as I could, went back to visit now and then but never felt like I belonged. I never missed seeing any of them.
My mom developed non-hodgkin lymphoma NHL and is in hospice care at home. She can wiggle her feet and lift her forearms to feed herself but that’s it. I don’t know how she can stand lying in bed like that. Dad is nearly blind so he needs looking after as well. My siblings were COVID deniers and conspiracy theorists who refuse to wear masks around these two vulnerable people. I feared for my own health every time I went there.
I took 48 hour caregiver shift. There two siblings who have been primary caregivers were relieved. They had already established routines and practices and gave me some cursory info and assumed I understood it. I thought I did. I was wrong.
I think there is something wrong with me. I’m embarrassed to say I don’t love my parents the way it seems other people do. We have a friendly relationship, but ... I remember the roadblocks they threw up, the occasional vicious beating, and there is an emotional distance on my part. I sometimes don’t understand what other people are feeling anyway. I try to guess and fit in. So when I am there, it’s not with a loving and compassionate mindset. Mom is almost totally paralyzed and bed fast, has terrible edema, her skin is swollen and leaking fluid all over. She’s not in pain, but what kind of life is that? We have to change her diaper pads, she’s up to 200 pounds at least and it’s really hard to turn her, and she HATES it and says she wants to die when we do. I’m torn between wanting to insist and wanting to, as always, allow her to make her own choices, and NOT wanting to do the diaper changing when she screams if you touch her. What is the balance? When do you insist on something for their own good even if it causes intense emotional upset?
I made an awful mistake. I thought we were just doing diaper changes morning and evening if she had pooped. I think the older sister was doing that. The younger sister was checking constantly and changing the diaper every time she pooped (she has a catheter) and assumed that I knew this was common sense. I did not. I thought it was a balance between avoiding problems and minimizing the emotional/physical distress. So one afternoon I changed the diaper when the aide was there. In the evening she hadn’t pooped so I didn’t force anything. The next day she had surely gone, but had a fit when I wanted to check and dad also wanted me to leave her alone. By that evening I had been without sleep for 48 hours and I made a poor decision. I thought, ok, let them do what they want as usual and change her tomorrow with the aide’s help. In the morning the aide was shocked by the amount of poop. The bedding was also wet, because Mom poured two glasses of water on it overnight, and it made things look worse. so she reported it to the nurse, who called the older sister, who called the younger sister, who screamed at me over the phone, and then they sent text messages to all the siblings saying the nurse was going to monitor everything because of abuse. I feel humiliated.
I didn’t intend and didn’t realize that was harmful. If I explained my thought process it would sound like making excuses. At least two sisters are heaping abuse and recriminations on me. I understand that they are also under huge stress and I deserve it, but it’s not helpful. I want a copy of the care plan so I can research and figure out what to do in any situation. It seems there is some mental problem that keeps me from feeling for them, loving them, just knowing what to do like a normal person. How do I atone for my mistake and do better? I dread facing the hatred and judgement, but I can. If I really do have emotional issues, how do I figure out the right thing to do? Is there someone else who struggles with this and has advice?