I am finding myself becoming angry. I have unresolved issues with my mom, but maybe I can handle those without harboring anger towards her, maybe. For now, I am angry at the hospital. While a fantastic facility in general, I have some issues. MAJOR issues #1: My mom spent 3 days in there in December, she was told she'd be ok (at first I thought it was over then but they reassured me it wasn't), continue on one pill a day and ok whatever, we celebrated new years 🙁 We see the oncologist on 01/06, same prognosis, stage 4, but no death sentence. She gets pain meds and we go home. One week later, she's hurting after she excessively used up pain meds – I don't fault her on this. I can't watch people suffer, I told her "mom, let's go". So we admitted her immediately for the 2nd time. One week in, I find out little. I am her power of attorney, along with Matt and Beth. I have now brought them to the hospital twice. I ask that I be called when any important information comes down the line or test results. After the first week, she starts comically hallucinating – we all thought it was meds doing it, because it can. At one point they had her on 5 different pain medicines. One day (of many days) I ask for information, the nurse says, "I don't have any, you'll have to talk to the doctor". Well, many attempts to "catch" the doctor failed, which is why I asked them to call me. My mom at this point keeps saying she's going home in a few days, they are weaning her down off of pain meds. So, 2 1/2 weeks after first arriving, I'm just waiting for her to get discharged. Julie had arrived for her trip, and I was hoping it wouldn't be while we were gone at the parks and stuff so I said, any day but Friday. Well, then I was told, ok, likely this week. I visited my mom last Wednesday, and the nurse and I were commenting on how well she was looking, the jaundice was almost gone and she looked less yellow. On Friday the 31st, exactly 30 days after she was last discharged, I got a voicemail saying they wanted to discharge her and were trying to get a hold of us. I got mad because of all days that day was our theme park day with Julie (which I feel awful about now). I called the number back, a lady answers and I say who I am, and her first sentence was, "Hi, we are trying to discharge Karen and make hospice arrangements.". I screamed, "What!?" and dropped my phone and just started screaming. Julie was next to me, and I told Matt to take the phone. NOT AT ANY POINT in the prior month, let alone this hospital stay, did anyone say my mother was going to die at all, let alone immediately within 40 hours, I was just up there and talked to them. I knew my mom was in denial and wouldn't tell me stuff, which is why I was her power of attorney and wanted them to tell me or tell me when I asked for info. I couldn't believe my ears, had I known even just 2-3 days prior which I'm pretty damn sure they knew that far in advance, I would have never left her room. I immediately went up to the hospital with Julie (thank god she was with me), and that doctor and nurse were like, "What? We were always here, there's no reason you shouldn't have known!". My mom immediately acknowledged Julie though, she said clear as day, "HI Julie, it's nice to see you". I cried, and I said, "mom….." and she replied, "I'm not convinced it's over" and then I said "mom, it's over, we've lost" and she repeated "I'm not convinced it's over". She got her last can of pepsi (crack to her), the nurse put a straw in it, she took a sip after I yelled to her it was there, she said "Ahhhhhhh" and then the a-ok symbol with her hands and she fell asleep and I never talked to her again. Well I did, but not with her conscious. If I had that on video I would have sent it to Pepsi because that's the final conscious thing my mom did and I left on the hospital's word that she was just sedated and would be more awake when she came home, which I was looking forward too, just a few minutes. I'm having a hard time being at peace with myself because I don't know if my mother even mentally realized she was dying. Usually your thoughts become clear and you are ok with things when they are final, but I don't think my mom understood and I'm not ok with that. I'm not ok with everything. Grasping that I could have had more time but that the hospital robbed me of that is hard to deal with. How do I deal with this? Obviously at least a heated letter to Florida Health is going to be on it's way when I'm composed and ready to not murder them with words, but inside I don't know what to do. ISSUE #2: My mom's mouth got so dry, by time I saw her at home her lips, mouth, teeth and tongue were black and the home hospice nurse said this should have never happened. She bled so much from her mouth wounds. I took my mom blistex last week because she was complaining about it, but nobody cleaned and kept her mouth moist. She also had a bed sore from not being moved the entire first week she was there. Ughhhh……
Originally posted on Facebook on February 4, 2014.
