Sincerely question my family's approach
Hi everyone. I want to say upfront that this post may be a little upsetting, but afaik, multiple mandated reporters passed their eyes over the situation -- and it seems to be that once someone is at end of life, neglect is socially acceptable. I guess I want to hear from other people to make sure I'm not tripping.
So, my grandpa died a couple years ago -- he was in his late 80s. I was a caregiver during part of the time he was already in Stage 5 Parkinson's. My role was primarily to help lift him with a gait belt so he could toilet, when that was still possible, and to bring him stuff at times my grandma didn't want to. I also stayed because I was a very strong advocate for engaging hospice services, which no one else was on board with other than my partner even though my grandpa was begging to die. The other people present were my grandma, who was also in her late 80s and the primary caregiver for most of it, my partner (for a few weeks), and finally, a paid caregiver who inexplicably had a nursing license but -- because hospice or palliative was not involved -- no ability to actually really do anything.
Basically, we arrived at a situation where my grandpa was housebound and then bedbound. He would have fits where he yelled "help me!" over and over. When one of us would go to help him and ask what he needed, he would apologize or say he didn't know. I'm not sure if this was delirium or something else because no one capable of diagnostics had been present for it -- over a period of months, I actually only remember a single doctor's appointment, which was telehealth and really downplayed my grandpa's condition. Is that normal? It eventually escalated to the point that my grandma decided to close the door and leave him screaming "help me!" with no medication to calm him (other than the occasional quetiapine prescribed by the telehealth doctor). By the time hospice was involved, he needed to be transferred to a facility and he only survived 3 or 4 days. I know my grandma was also forcing him to eat, and I was fully left out of decision making.
My grandpa put off getting any professional help for a couple months, claiming that in her 80s, she could provide all the care he needed. She actually kicked me and my partner out because she couldn't stand "having people in her house" and ended up giving herself a widowmaker heart attack. By the time she got a paid caregiver (again, who did very little because he was fully bedbound by this point), he needed hospice's services for months and my grandma had not engaged because she "couldn't handle thinking about it" (whatever that even means, not really sure what the end result of thinking about it would be).
Now my grandma is dying from lung cancer and has shut me out, I think primarily because she knows I would confront her about what she did and didn't do with my grandpa. If I can get an audience with her, I think it is actually worth confronting her about this situation. I realized that EVERYONE in my family has constantly been telling her how brave and strong she was for handling the situation herself, but from my perspective, it was mishandled to the point I should've personally reported it to APS if I wasn't made to feel like I was insane for finding it neglectful.
Is it normal to delay hospice care until someone with stage 5 Parkinson's has 5 days left? Is it normal to leave them yelling for help and to not inquire about medications that may be sedating or calming beyond an antipsychotic prescribed by a doctor who didn't even see him in person? I feel like he probably should've had lorazepam way sooner, a professional caregiver should've been brought in way sooner if my family wasn't going to utilize my help, and like everyone is gladhanding my grandma who very seriously wronged a man she was married to for over 50 years.
It genuinely is my assessment that our culture gives a free pass to neglect if someone is at end of life and can't/won't complain. Certainly in those last weeks, my grandpa had no access to a phone and I don't think would have been able to use it if he did. I'm not even sure of his competence to ask for what he needed or for more help)to be put in a facility other than in very brief moments of lucidity that were treated like they were worth keeping him suffering 99% of the time to experience.
So... am I crazy? What do you make of this situation? Should I bring it up to my grandma? I think she should actually know that she didn't get away with it, not really. But I can be somewhat vindictive so I want to be sure this isn't incredibly heinous to do.
Thank you and sorry for the length!