Ok, first things first, I’m mostly back. I’ll be slowly getting back to posting and replying. Thanks for your patience everyone.
So, I’ll try to make this long story short. My mom died last Thursday. It was sudden and unexpected, I still have random moments of feeling like it was all a dream. My mom was disabled, she had sever Multiple Sclerosis. I’ve been sort of estranged from my mom for a few years because of her boyfriend, my mom cheated on my dad and her boyfriend cheated on his wife all while my dad was in the hospital dying. Two weeks ago, 4/14/15, I went to the house my mother and her boyfriend were living in because he had hurt his foot and couldn’t lift mom out of her wheelchair. When I got to the house it was disgusting, there were piles of garbage that we close to four feet tall, fruit flies, rats, rotten food on the counters, the fridge was stuffed full of rotten food and mold, the kitchen sink was a solid mass of plates and mold that spilled up and over the top of the sink, and I can’t even begin to describe the smell, it was a combination of dead flesh, human/animal waste, standing water. No matter how bad it sounds, it was worse.
A friend went with me to the house to make sure I was going to be ok, we started cleaning. I told mom’s boyfriend that the house wasn’t allowed to get that way again. I told them I would get a nurse to come help mommy and if the house even started to get bad again I was putting mom in a nursing home. My godmother went to the house with me to clean my mom on Wednesday and Thursday, it was probably the first time she’s been cleaned in months. We noticed that the upper part of her legs had atrophied and that her lower legs were as large as my thighs. A nursing student friend came at the end of the day on Friday to check for signs of neglect. She found them. We found out her boyfriend only changed her Depends twice a day at maximum and that she’d been in her wheelchair almost 24 hours a day for four months straight. We decided to call Adult Protective Services (APS) as soon as they opened up on Monday. By Sunday my mom was having terrible leg and back pain and couldn’t get comfortable. I called 911 and asked a police officer to come as well. At the ER I told the nurses and the doctor what was going on. The nurses locked mom’s room down and got ready to report the neglect. APS was closed on Sunday so the nurses left a note for the nurse that would be my mother’s nurse to call on Monday. When I checked to see if they had called the nurse (who legally is a mandated reporter) said it wasn’t her job. She gave the phone to the social worker who said that I could call APS if I wanted to but the hospital really didn’t do that. I explained that having someone else call in would allow me to not be the bad guy where mom was concerned and that the hospital reporting it would get something done faster. They made me come In to report it. On Tuesday she asked me not to come to the hospital. The text was in her boyfriend’s speech patterns.
Later on Tuesday a doctor called me to tell me mom had had a cardiac arrest and that they’d started resuscitation, they asked what I wanted them to do about resuscitation. I told the doctor that mom had a DNR (Do Not Resuscitate) order. The doctor didn’t listen to me at all, kept saying how she knew it was a tough decision. I kept saying she was DNR. Finally the doctor hears me and I hear a nurse in the background screaming that my mom was DNR. I assumed she was dead. Left work to go to the hospital, friends were meeting me at home to drive me. I called the nurse to confirm that mom had passed away. She said “No” and that mom was “fine in ICU.”
When I got to the ICU I found out that the doctor had continued resuscitation and put my mom on life support. I then found out that she had been dead long enough before resuscitation that she had turned blue. Judging by the text conversation she had been having I believe she had been dead at least 20 minutes before her boyfriend, the one who had been neglecting her, found her. He called for the doctor and said he wanted her to live.
In the ICU I found her boyfriend and his priest. He told the ICU staff to remove me from the room and ban me. I found out that he’d told everyone that had worked with mom that he was her husband and had power of attorney. He also told the hospital staff that I wasn’t allowed to make medical decisions. I won’t go into the details of the arguments that ensued, except to say that his priest tried to mediate and get me to allow mom’s neglectful boyfriend to make the decision about ending my mother’s life support. Needless to say I didn’t agree to work with him.
Around 4:30-5PM the hospital finally asked him to furnish his power of attorney. It took them 2.5 hours, from the time I arrived until the Palliative care nurse started talking to him about options, before they would stop asking him medical questions.
At 8:30PM, after my grandmother arrived, we took my mom off of life support. The nurses hadn’t expected her to live the three hours we waited for my grandmother, they assumed she would pass within a few minutes of being removed from life support. My mother was brain dead and survived off of life support for almost 48hours.
About 15 hours after removing her from life support we decided to move her from the ICU to a Hospice. Her attending physician walked into the room with out talking to the nurse or reading my mom’s chart. He asked who the daughter was and then said he’d never seen me before and that my mother’s “husband” told him not to talk to me or except medical directions from me. We told the doctor that the man was not my mother’s husband and he had neglected her. The doctor didn’t pay attention. I also asked why mom’s DNR had been ignored. He didn’t know that she had been a DNR. He looked at the monitor, said mom was doing fine and she was stable. The nurse ushered is from the room and told the doctor that we were sending mom to Hospice and that she was not expected to make it much longer. The doctor then walks up to me and says everything looked good and all we could do now was “cross our fingers.” I asked what that meant. He said that he meant we should cross our fingers “that she wakes up.” I pointed out that my mom was brain dead. My friend told the doctor he was upsetting us and I walked away.
So, if you’ve been wondering where I’ve been the last two week’s that’s the saga. I’m tired, depressed, angry, and sad. Give me some time to get back into the swing of things again.
