At 3:42 pm this afternoon, I got a call from a woman who had been one of Mom's aides in the nursing home. She told me something so upsetting ...that I first of all can't even imagine this happened ...or that this is EVER done this way in a nursing home or anywhere. It seems BARBARIC and even though I had nothing to do with it ...I am now feeling extreme guilt for not being there that week and extreme anger over what I think may've happened (as I piece) it all together and extremely extreme anger at the one nurse who ...if I didn't know better seemed to be intentionally neglectful of my mother because what ELSE could explain her lack of concern ...her lack of concern to take IMMEDIATE action?????! Actually ...I don't know better. If the aide is telling the truth ..there are some other occasions I am aware of in which she seemed to be inattentive and even intimidated me so that I didn't always push for something or insist on help with helping mom call here. The entire winter I had concern about mom's abdominal pain, but she also had dementia and so when some came in to check ..she'd say her foot hurt. Never the less ...when pain hit ...she gripped her abdomen which caused me to think bowels. She died of a GI bleed that night in April. I believe she was septic ...prior to the ER visit. There is just so much - I don't want to get into it now.
I've got questions all over again. I never did review the ED records from the night she died. Those triage notes might contain a wealth of information that just might kill me to read. I suppose it is why I've buried my head in the sand over this and frankly ...have been in limbo regarding the week, day, night ...mom died.
I've written about that time period in this blog and privately. I journaled all of it. I did it just to cope with my feelings and then I let it all go. Or ..I just didn't want to face it ...not anything to cause me to feel worse than I already did.
But now ...after this call ...I have to go find out what I can for myself.
The thing is ...why is this aide calling me? She did bond with my mother. And she certainly put in the extra effort with her. The only one to take the time to paint her nails. She was the ONLY worker there that called me to put mom on the phone. In 6 months time ...she was the only one who acted on the words I wrote in black marker on hot pink paper taped on the wall over Mom's phone. I asked anyone that came into the room to please call me and put mom the phone because was incapable of calling me herself. Cafeteria workers, housekeeping, nurses, aides, administration or maintenance ...I wouldn't have cared. Anyone would've been appreciated. But no one ...took the time ...but this aide.
So ...I do believe she was conscientious and did care about my mother.
This aide called me two nights after mom died ...on a Sunday night about 8pm to tell me she was sorry. I'm pretty sure she broke nursing home protocol doing that and HIPPA by taking my number out of the nursing home. I don't care though as I did appreciate her kindness.
The thing is she called again ..telling me some things that occurred on her last shift with mom, before mom died that night. We talked a couple more times ..the last time that September I believe.
Then she called me around Christmas and the following mother's day and the mother's day after that. I spoke with her at Christmas, but never returned her calls after that. It was just too painful... even though she was just checking up on me.
She is originally from Guyenna and has lived around the world, but been settled in an area near Newark and commuted up here to work ...although she was let go from that nursing home when she reported an aide being violent with a patient - shoving and elderly woman into the bed rail because she was annoyed she was called in to change her. The woman was sore with a lg contusion the next day and Mom's aide reported it and put it in writing. The supervisor told her to reword it and not put what she put into writing but she did not redo it. More happened and she was dismissed while the other woman was allowed to stay and she wondered if that violent aide had something on the nursing home.
I say all this because it does not escape me that possibly she has felt vindictive and wants to cause trouble for the home. because they also prevented her form collecting. But that was at least 3 1/2 years ago now.
Interestingly, not long before mom died ...she told the aide that she was pregnant and having a baby girl and aide said no way. She was and she did. That little girl is now 3 years old.
The thing is I know from what I myself witnessed and experienced that she took good care of my mother when she had her. I was very grateful for that. Night shift not so attentive but that is another story.
Anyway ...I was surprised to get her call and this time I decided to take it. I asked more questions. I asked about that week with mom again.
I saw mom on Easter and she was doing better than she had been. I was encouraged. I told her I would not be in until Thursday because it was tax time and anyone that knows me knows that I put it off until last minute and then am consumed getting receipts, etc the few days before due. Mom understood. But I was also tired and was experiencing nausea everyday and so I did not go Thursday either. I was however getting ready to go over that Friday afternoon, when the nurse called to tell me that they had to put a foley in mom that morning, but that she was fine now. I asked how many ccs she put out and she said she didn't know because it came out around the foley.
I don't think I asked why it happened or if a urologist would be consulted although I did find out they use my urology group and so maybe I did ask those questions although I know I have never known the cause for that.
I also know they didn't care to consult a gastroenterologist for her abdominal pain.
I also know that extraordinary means are taken on people that should be allowed to die of natural causes in their elderly years.
But ...my major concern/FEAR is that Mom
That afternoon I asked about the open wound she called about in the beginning of the week and had informed me she called mom's doctor to get an order for a special salve to heal it. She told me it was healing "nicely." I asked how mom was and all chipper and like she was smiling over the phone she said, "Oh she's FINE and talking with EVERYONE!:)"
So ...I ...said tell her I will be in first thing inn the morning. Why I didn't ask to speak with her ...I don't know. I had the image of mom happily talking with people like I had seen in home life and enjoying conversation and guess I didn't want to interrupt that. I felt like all was well.
And then not long after 6 I got a call from an obviously distraught supervisor that mom had a GI bleed. There is more to this story ...the week before ..the night before ..that morning, afternoon and response of hospital staff when I asked confused questions. I will say I had the feeling something was way wrong before mom ever got to having to go to the hospital. matter of fact the supervisor seemed upset when I called back and said I'd meet them over at the hospital at which point she said paramedics had to intubate her. I am sure she would've died at nursing home had I gone there. I flipped that they hadn't already transported her and so they did.
So today ...while asking questions ...the aide again told me she knew instantly that something was wrong because mom wouldn't sit up and when she was changing her saw that her stomach or abd (not sure now) was size of pumpkin. First of all is that even possible from urine???
She said she pressed it and urine came out and mom cried out in pain. She told the nurse who lied to me later that day and she did not believe aide or wasn't concerned and so aide got other person and that person told nurse and she came down. Now that nurse said she couldn't tell me how many ccs she put out because it came out all around the foley.
This afternoon the aide told me she never used a foley... or foley bag. That they pressed it out of mom. and it was painful for mom.
Is that possible?
And she said they were shocked that it filled up the chuck or whatever pad they used. They squeezed it out into a urinal a mans urinal or now I am confused but whatever they used it filled up one and a half of them. And you KNOW it all didn't get squeezed out!
So I have to find out again what was used to collect it. Why wasn't urologist consulted? What exactly is documented in those nursing home notes? And how will it compare to the ER triage and H&P notes later when they assessed her upon arrival to the ED?
I really didn't want to pursue this ...but now I just have to.
I can't bare to think about it now though. :(
I really let mom down that week. I mean I erroneously trusted the nursing home more than I should have. I was guarded and knew to check up, but in hindsight I allowed myself to be intimidated at ties although other times I came at them like gangbusters when I saw they were leaving an open cut on her diabetic, poor circulation leg and only because of my insistence that night did the nurse come and put a dressing on it. She stated the wound doctor would do it when he came in... which was not that often. WHAT????? She had to listen to me politely yet assertively rant on acquired infections and consequences in medical facilities. I wasn't the nurse! I did like that one tho.
Anyway ...in last call a few years ago Mom's aide did tell me momalso had multiple cuts on her legs (from wheel chair) that weren't dressed.
I believe either that open wound in beginning of week was infected or she had sepsis or some infection going on systemically that week.
Also ...while I am responsible for again choosing not to go in that day to see mom ...it was ONLY because she indicated mom was doing so well and seemed happy. basically she robbed me of my last hours with mom.
The aide had also asked her when mom refused to eat that morning if they should call me and that same nurse who supposedly catheterized her said, "No because then she'll come in and ask a lot of questions and want tests done."
Actually, the night aide told me she knew something was wrong when she saw mom refused to eat even her ice cream at dinner the night before because she LOVED her ice cream.
I'll stop here for now.
What would you do about this?
I wanted to forget.
But this latest coming to light.... swelling as large as a pumpkin ...not using a foley to drain her, pressing on her abdomen to expel all the urine? And did she retain urine when brought to ED?
And why in the world didn't they schedule her to see urologist? Obviously SOMETHING was wrong.
At the very least urge me to come in and visit. My God ...if I knew any of this or perceived the urology issue as emergent I would've been there in a heartbeat and stayed! I will have to go back to look at what I wrote to find out exactly what was said.
She must've been suffering in quiet desperation ...unable to tell anyone why. :(
And it took her one attentive aide to get the help she needed.