It isn’t often that Facebook rolls out a feature that really impresses me. The one thing they have done (relatively) recently is the “On This Day” feature that lets you look back at what you had done on any given day in the past. It is generally a fun thing to look at.
But there can be a somewhat dark side to it as well. Over the past month I have been, through this feature, reliving the past 3 weeks from 5 years ago. I wanted to blog about this long ago, and today just seems to be the time. Be forewarned, if you choose to “read more” there is a lot this is not a short rant.
It started Xmas Eve, when my Mom, who had been in and out of the hospital with increasing frequency decided she didn’t want to “bother anyone” and just called an ambulance and had herself admitted to Bayonne Medical Center. She did this because of issues with keeping food down and a general lack of hunger overall. She knew she wasn’t getting enough nutrition and was often feeling weak. Nobody was particularly happy that she did this, predominantly because of a lack of faith in Bayonne Medical Center. And as you will see, these concerns were justified. (At least at the time, I have heard that since CarePoint acquired the hospital, things have improved, though I am not sure how much I would trust this place in a life or death situation.) Despite feeling weak, Mom was generally in good spirits
Christmas Day – Mom looks and sounds a little frustrated, and now has developed a not so nice sounding cough. The doctor wants this cleared before she is sent home. Not that I really thought she was going to be released that day, but I was hoping. I really hated (as did the rest of the family of course) the thought of her spending Christmas in that place. We all spent a good part of Christmas Day with Mom in the hospital. Before she had admitted herself, she cooked and prepped things for Christmas Dinner, wrapped presents, etc… So everything was set up at her house. Eventually, as the night went on, it was decided that everyone should go back to the house to eat. I let everyone else leave, promising to follow shortly. I spent another hour and a half with Mom. I didn’t want to leave, I didn’t want her spending Christmas alone. Eventually though I was caught and informed it was after visiting hours and I had to go. I chatted with Mom a few more minutes until threats of security were mentioned, and I finally said good-bye and left. It would be the last full conversation I would ever have with my Mom.
That night, it snowed… a lot. My Mom calls the house and says she is dying. She can’t breathe and the nurses aren’t responding. One family member trudges through the snow, barges past security up to my Mom’s room where the nurses have the audacity to utter, “you should have told us.” I get a call around 6 am that mom is not doing well. Because of the snow, it is about 9am by the time I am able to get to the hospital. Mom is on Oxygen, struggling to breathe. They had not, and this is now some 7 hours later, yet done anything but give her the oxygen. After much yelling by both my sister and I, she was brought down for a chest X-ray. A while later, we get the on call doctor, who informs us, that “well, she has some fluid on her lungs” (and you went to medical school for this?), “and basically, her cancer probably spread to her lungs, so really there isn’t anything we can do” (Wait… Did you even GO to medical school?) Probably? Her cancer has not in 15 years spread to any other part of her body, and now, suddenly overnight it has metastasized to her lungs to a point of no return? He informs us that he can’t say for sure from just an X-Ray. So what you are telling me is.. you don’t know. I ask if there is a real doctor in the hospital. Calls go to Mom’s doctor’s answering service, and the on-call member of the group comes in. Mom has pneumonia, they will drain the fluid to see if that helps. It is another couple of hours later, listening to Mom sound like she is drowning in her own lungs, and lots more yelling before we finally get someone in to drain her lungs. There is apparently only one person on staff in the entire hospital that can do this, so he does it “on rounds” (Takeaway here, don’t ever get sick during the holidays). This is really not sufficient and not done nearly frequently enough. Mom is getting worse, so the decision is made to move her to ICU. By the time she is brought down, she needs to be put on a ventilator and is in a coma.
I mentioned in the one post I did write on this matter about Advanced Medical Directives, we had some challenges including one doctor that lied to us about my Mother’s condition, called me and my sister assholes to attending nurses (which I only found out, because another nurse brought us in behind the curtain to hear this doctor’s rant), put a DNR bracelet on my mother (based on her lie that she had a second concurring doctor), and got to a point where in the middle of the ICU, I informed her that she was fired, which she said, I could not do unless I had a replacement doctor. I stormed down the hall, found a doctor, had him review Mom’s chart, and upon confirming that the doctor had lied, again informed her she was fired, and that if she set foot in my mother’s room again, I would get a court ordered TRO to keep her away.
Even with the new doctor, the struggles continued. We had to (why, I still don’t understand) inform the staff that she was in fact not being given any nutrition at all. Everyone thought “someone else” had ordered it. And several hours later, she was added to the roles. In comes a woman and brings in a can of Ensure. Apparently, somebody seemed to think that a woman in a coma, and on a ventilator was able to sit up and drink this. Absolutely stunned, the calls again went out to paging services, the doctor’s answering service etc. It took another day and a half to get her an IV. Even then though, the cans of Ensure continued to come. Informing people that she could not drink it was of no use, telling them that the orders had been changed and she was being properly (I guess properly) fed via IV, had no effect. The cans continued to stack up in the corner of her room, a testament to the complete ineptitude of this hospital.
I was fortunate I had family that all were ready, willing and able, and most certainly did help. My aunt, who essentially became my mom’s caregiver when my dad passed away was of course always there for us. My uncle drove up from VA and had a better understanding of some of the technical aspects and always seemed to know the right questions to ask. My cousin Patricia (who herself regrettably passed away not all that long ago) provided insight from a nursing perspective and told us what to ask for from the staff. Other aunts, uncles, cousins, pseudo-family and friends all helped in various ways and helped what seemed like a simply out of control and lost situation, and turned into something that could be dealt with all without having a nervous breakdown. It was also one of the first times I really appreciated the connections made and re-made via Facebook. Having people to talk to, and help keep my spirits up (and let me know I wasn’t crazy when I was fighting some of battles that occurred), really helped keep me from going insane (or at least any more than I already am). I still owe a lot of people a debt of gratitude for helping me survive it.
After about 10 days, there was a glimmer of hope. Mom’s breathing improved, and I was fortunate enough to be there when she woke up and was removed from the ventilator. She whispered to me, “You look tired.” This would be the final time I heard her speak. It wasn’t long before the fluids started building up. She was not allowed to drink so the best we could do was wet her lips and tongue with a sponge. She languished but continued to fight. We tried to get a feeding tube installed because she was simply not getting enough nutrition, but by that point she was too weak, we tried to get her out of there to a better hospital, but it was determined (and I unfortunately had to agree) she was not capable to make the journey. And her health just continued to decline. She would sleep more than she was awake. She seemed coherent and seemed to understand when we asked her things, but I don’t know if that was accurate or wishful thinking.
January 16th I did not like how things were going, and the weather was once again poor (we had quite a bit of snow in this 3 week period), and Mom was moved out of ICU and back into a room. The weather was lousy, and I was concerned (after the events that started this) to leave her alone and I decided to stay. I would nap from time to time (I don’t know how anyone sleeps in a hospital with people always in and out of rooms), and other family members would take over shifts so I could at least get up and walk around a bit. But there was someone at her side virtually 24 hours a day at this point. Something that had always been so vivid in my mind was when my grandfather passed away, how my Mom said she was right there with him, holding his hand and felt his last pulse. She was with him at the end, and from that day I promised myself that I would do that for my parents, so that they would not be alone. (My father’s death was quite unexpected, and I was not able to be there when he passed, but at least my mother and sister were. This only steeled my resolve though to be there for my mom.)
January 18th, that days tests came in and we now had to accept the inevitable. There was nothing left that we could do except make Mom as comfortable as possible. One thing my mother had always maintained (though I do not know why) was that she wanted no part of hospice. While we wanted to honor those wishes, she could not be moved out of the hospital, and she really could no longer stay in the location she was at in the hospital, so my sister and I met with the hospice worker. They had a hospice “floor” for patients like my mom and they would be better equipped to deal with keeping her comfortable. We agreed it was the best option, and signed the paperwork. We were told to go ahead and go get something to eat and they would clean up mom and get her ready to be moved to the new floor. We went downstairs, tried to eat, talked about how we would handle shifts of visitations, and reviewed how we got to this point. My sister went back upstairs, and at the time I was smoking, so being downstairs I decided to go outside to have a cigarette before returning upstairs.
That is when I got a call from my sister. Seeing her name on the caller id, I swallowed hard and hoped that she had forgotten something in the cafeteria, or wanted me to get something from the store before returning back upstairs. Instead, she just said that I needed to get back upstairs. My eyes started to well up as I bolted through the hospital and back to her room. As I entered the room, the only sound was my sister sobbing. The hiss of oxygen, the beep of the IV machine were noticeably absent. And I broke down and cried. I cried naturally and mostly for her passing, but I also cried for my failure to be there. January 18th, 2011 Rosina Theresa Romeo (nee Ioffredo) passed away and left a hole in the world. I promised that she would not be alone in those final moments. And I failed.
I appreciated once again that I had family and friends, because I was a wreck. And they did help me get through it. But I also learned something. Though I am not entirely sure if this is just me (so some feedback would be appreciated), there are some thoughts will share.
“There is nothing you could have done.” – Yes, I know this. But you saying it, makes it sound a bit… phony. Like I could have done something, but you don’t want me to feel back for not doing it. This doesn’t help.
“People often seem to wait until they are alone to die” – This is like “it is good luck when it rains on your wedding day.” Everyone knows it is a load of crap, but there is nothing you can do about it, so here is a justification to make you feel better. Again, not helping.
“She is in a better place.” – Did she hate us so much that death was a better option than being with her family and loved ones? I certainly hope that isn’t the case. And assuming I am correct, the place she is in, is NOT better.
They say that it gets easier with time. I guess that is sort of true. Accepting that you will never see or hear them ever again doesn’t get any easier, but you do develop and improve your coping mechanisms so that you can continue to be a productive member of society and continue to live you own life. Clearly, I still have some work to do. I still have that last Christmas card and envelope she gave me. It is like that little piece of her that helps me get through my day. It is so hard to believe that it has been 5 years. I miss you mom.