I have come into a new phase in my life, my attitude has been altered and I have very little experience with this new place so it seems right to introduce a new writer, Natalie Benek, who will share this blog with me and, in her own posts, write about coping with grief, an issue that envelopes both of us.
Lew: Natalie, I’m struck by the fact that all of the dementia writing is informed by ambiguous grief, that felt while the loved one is alive, and there is very little written about the grief after the loved one has died. Is grief the real enemy, the same thing?
Natalie:Yes – either we are expecting this enemy and do our best to prepare for it’s arrival, or we are ambushed – doing our best to shield and shelter ourselves from the catastrophe unfolding in front of us. Grief is one in the same, turning our safe spaces’ – our minds, hearts, homes – into empty, uninhabitable trenches that we used to retreat to.
The originating event can be different and our life experiences will affect the depth, strength and intensity of our grief and it’s formation – but the shape of the grief is similar. The challenge to each of us is to not let the grief destroy us.
Lew: I’ve read your Facebook page and we’ve talked so I know a bit about you but, obviously, most other people coming here haven’t so tell us a bit about yourself and your life situation.
Natalie: I am in my late 20’s, with 3 children. I have two boys, ages 3 and 4, with the oldest on the autism spectrum. My daughter is almost 10 months old. On August 6th, 2017, my husband woke up about 6:30 a.m. complaining about feeling ‘a bit off’. Over the next 30 minutes, his feeling progressed into nausea, cold sweats, and pain that radiated into his shoulders and stomach.
Having had an emergency appendectomy two years previously, he thought now his gallbladder was the culprit. I drove him to the closest facility, a hospital, where he told the ER nurse he might be having a heart attack and was seen immediately. As he lay in the hospital bed, the staff began attaching leads and checking monitors while I sat holding his hand. I wanted to sit next to him on the bed, but couldn’t fit – I was 35 weeks pregnant, with our first little girl.
Thirty minutes after the first pain, fifteen minutes after getting in the car, and only five minutes after arriving in the hospital, my husband lost consciousness. As his vital signs dropped, the staff started CPR and gave him epinephrine. People were shouting times and dosages; I remember being numb, the only sensation being the cold of of the chair’s metal legs. As more people crowded into the room, rotating the CPR, I had to step in the hallway. Someone showed me to the waiting area, just opposite where I could hear, but not see what was happening.
A doctor came in.
“We are doing everything we can, but your husband is not responding. His heart has stopped, and we have not been able to get his heart back to a rhythm that is compatible with life. We have a machine breathing for him while we try to get his pulse back.”
My heart imploded.
I asked the obvious questions: What happened, what are our options, and what is the next step?
It was either a pulmonary embolism or a heart attack; without his heart pumping, there was no way to rule either out – or to keep him alive. We needed to start discussing what we wanted to do if their attempts were still unsuccessful at the hour mark. After 90 minutes, there is no quality of life, or possibility of reviving him. The nurse said, “After 90 minutes, we will cease resuscitation attempts and turn off the machines. I can come and get you if you want to be present, in the room with him, when they stop CPR – but you don’t have to be there. It’s completely up to you.”
I didn’t know time could get any slower, or in retrospect, pass by so quickly. Our nurse came back and gave me a few minutes to prepare myself – but preparing for it wasn’t possible.
I followed the doctor into the room to Aaron’s side once again. My husband lay there, not moving on his own, just being jostled by the CPR. The doctor and I locked eyes once more before I nodded in acknowledgement; I wanted to let his body rest – we did everything possible, and sometimes that isn’t enough. Counting began for the compression as I moved towards Aaron, while our doctor turned down the volume on each monitor. I held Aaron’s hand as tightly as I could during those last minutes, wishing somehow it would be enough to get me through the rest of my life without his hands grasping mine ever again.
Since then, I’ve been leading our family into areas that are unknown to me and my family, and wading through tears thick enough to slow even the strongest person down – but I needed to attempt to handle myself with strength and grace.
Lew: Surely your journey to get to this space we share was more painful and so sudden. But we are together in this. My wife has died and I’m trying to cope. All of us will be facing this period and hoping to get through it intact. What will you be writing about?
Natalie: In a nutshell, grief. Dealing with grief, all kinds, all phases. In my world. this nutshell was broken, and all of those parts and pieces were scattered everywhere. I will be reminiscing about my past, and recording my hopes for the future.
Lew Lorton’s story that brings him into the same place with Natalie
Tuesday, the 15th of May was an odd day. I had a bunch of errands to do that had piled up from the week before and so I went, first to the grocery store, then to Best Buys, then to a hardware store and then I drove up I95 and West around the Beltway to an exit I had never been before, to a funeral home to pick up my wife’s ashes.
But, of course the real beginning of this day started many days earlier. My wife had been an in-home hospice patient for some few months. Her hospital bed was in a room right next to my office and I had quickly developed the habit of popping up to see her every ten minutes or so. During the day, a care giver dealt with all the real work that was needed and so I was free to look in and hold her hand and talk to her.
But in just a few days her affect had changed subtly but noticeably; she still looked at me but her expression rarely changed. She held my hand but there was no sense of the communication by touch that we had enjoyed before.
Our caregiver who had told not to worry until she did, now gave me a different message as she left for the day. “Call me if you need me”, she said.
On Tuesday morning, the 8th of May Jackie she woke and went immediately into Cheyne-Stokes breathing – an abnormal pattern of breathing characterized by progressively deeper, and sometimes faster, breathing usually symptomatic of a disturbance of the breathing centers in the brain. The very deepest breath seemed to shake her entire body and then there was a temporary stop in breathing and she started at the bottom of the cycle again. She didn’t look at me or respond. Her eyes were open and glazed. Every few moments, I reached over and pulled her lids closed to wet her corneas; she didn’t seem to notice.
This Cheyne-Stokes breathing lasted for several hours and then subsided into steady labored, open-mouth breathing with pauses between each breath. We used a small sponge on a cardboard stick to wet her lips and mouth.
The pauses between each breath grew longer and longer and, eventually, at 10:12 PM, with me standing on one side of the bed and her care giver on the other, her pause grew infinite and she never breathed again.
My first emotion was relief that she wasn’t struggling any more, then wonder that the crushing grief I had anticipated hadn’t yet hit me. We called the hospice and went through the process that took until almost 2 AM.
For almost a week, I was seemingly fine. I went about my normal routine, decided to sell my home and move and did everything I usually did as if nothing was changed in my life.
Now, more than three weeks after her death, grief has come.
It is like smoke, it is there with every breath and now I begin the long process to accommodate to it.