My mother is actively dying in front of my eyes. She has been chronically ill for years, and has been classified as "END STAGE COPD" for the past two years, but Thursday November 1, 2018...everything changed. She had been living independently in her own home around the corner from where I live with my husband and two sons and had been receiving hospice services since June 2017. I still don't know what exactly happened, I have not been able to put together the sequence of events...but after I brought her breakfast on 11/1/18, sometime between 9:30 am and 11:30 AM....her world turned upside down. She took a double dose of the muscle relaxer she was prescribed the night before and fell at least once while going to the restroom...the only apparent injury at the time was the major skin tear to the top of her right hand...over the course of the next few hours it was clear there was something else wrong. She was having hallucinations...The first episode occurred prior to my arrival and was witnessed by my son and her hospice care givers...she began to see her mother (who expired in 1967). I stayed with her from 12:30 11/1/18 and will not leave her side until she leaves this world.
She had been sleeping in her recliner in the living room for well over a year prior to November 1, 2018...She was not able to tolerate lying flat and preferred to sleep on and off at her leisure watching television in the living room while lounging in her recliner. Sometime between Midnight and 3:00 AM on 11/2/18, she began to have another episode of hallucinations, with delusions beginning as well. She believed we were in a maternity ward and there were babies in the room, and she was very upset that they took the baby away and she demanded to be able to hold the baby...She knew who she was, she knew what the date was (well the approximate date, she didn't realize October was over), she knew the president (and took great satisfaction in rubbing that fact in my face--a long standing routine between us regarding my disapproval of the current president and her adamant support of the current administration)...she recognized me and after about an hour the hallucinations/ delusions dissipated and she recognized and verified that we were in her living room in her home in York, SC...
later that morning she began again with hallucinations, (but, I feel that there is always a possibility that she did see something that I couldn't because she is dying)...she saw her deceased older sister who recently passed in July of this year. It has been a rough couple of days, so I am not sure if the ants made an appearance before or after the emergency room....so that may have started as well.
MY HUSBAND, the most UNCLINICAL , non-medical person I know was the one who thought to ask if she hit her head when she fell. I have been a nurse since 1995...I worked in ICU, in long term care facilities and am well aware of what happens when you fall and hit your head...but when it comes to my mom....she being sick is my kryptonite...I can't process things clearly when it comes to her when all hell breaks loose..
She was alert, oriented and clear when I asked her if she hit her head when she fell...and her response was "Oh yeah, I hit it right here" and pointed to the front of her forehead...to my relief, there were no signs of trauma....but I was still instantly panic stricken because of the potential cranial bleed causing the changes in her mental status, hallucinations, and delusions.....
I immediately called her awesome hospice nurse Dexie, and after consultation with her office, it was decided that we should send her to the ER 911. This was my Friday morning....
Before finding out about the head trauma, My son Jacob called and offered to bring us something for breakfast...and I had forgotten to text him that we were going to the hospital in the rush to call 911 and get mom to the hospital....so of course he rolled up right as the EMS workers were hightailing it inside with the stretcher and the ambulance was sitting in front of her house with the lights flashing...He was hit with the gravity of the situation without notice and after being up all night...started to get anxious...and with it he showed signs of frustration as we got to the ER right as they were transporting her to the CT scan...and he didn't understand how things work in the ER and that we are not going to have instant updates....He was getting dangerously close to channeling my dearly departed father and losing his cool in the middle of the ER...so I told him that he needed to go home and that I would tell his nana that he was kicked out of the ER ...because he was so upset worried about her...and I emphasized to him that she would be significantly proud of this "channeling of my dad" and she would not be disappointed he left. especially since he had been up all night working.
I am not fond of the ER at this hospital...The doctor did a mini mental status exam and she passed with flying colors....AS I SAID BEFORE ...she WAS NOT CONFUSED (Initially)....her issue was HALLUCINATIONS...and she was aware at that time that what she was seeing was not real. BUT THE DOCTOR BLEW THIS OFF and didn't really listen. To their credit, they did all the right tests and determined that there was no active cranial bleeding...and that is all I really wanted to know for sure...if all this was related to her disease process, then we can deal with it accordingly, but if it was related to a head trauma, then all bets were off and that had to be addressed....
The nights are the hardest for me..I cannot leave her unsupervised...She will likely not rouse enough to attempt to get out of bed unassisted, or understand how to even attempt it...but I don't want to tempt fate. I watch over her...from the recliner at her bedside, or from the kitchen table in the adjoining room while I do my work....My husband has compared me to a prarie dog because I will jump up and check her breathing if I cannot see it clearly from my vantage point and only return to whatever I was doing when I see her chest move and am convinced she is comfortable...My husband is working day shift..and has to go into work at 6:00 AM, I have an amazing job and work from home (her home now) and can keep watch while the hospice staff rotates different disciplines in and out throughout the day....but when work is done, I still watch...until tonight, I didn't take naps...I had been awake since Sunday morning..(it is now Tuesday 5:06 AM). No one is comfortable (family-wise) to give her meds or reposition her....other than me. So while trying to sleep, in the back of my head I am worrying about if she is comfortable or if she is getting anxious...because my interpretation of her anxiety and my family members are different....I want to address it at the immediate onset and prevent any distress...they don't catch the subtle changes (like her tremors starting to show in her hand, or her facial grimace intermittently...or the change in her breathing)...they identify there is an issue when she starts squirming...(or when she did start squirming)....I stay up at night and watch over her..I have occupied myself with sorting through drawers with photos, trinkets, etc and trying to make sense of her life history since she was never really open to sharing some of the early life details..but this is when the sadness and despair kick in...I have pleaded with my deceased aunts and my dad to please come help her find her way..I have told her how much I love her and how sorry I was for being a pain in the ass....but it doesn't help....being alone dealing with this is heartbreaking...but I can't expect anyone to stay here and hold my hand...it is my job as her daughter..so I will deal
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