Tag: caregiving

I was up very early and on my way to North Shore Hospital. Driving there,, thinking…” Will Deb wake up today” Will Deb Wake up today, will Deb wake up today?” What’s next? Arriving at the hospital at 8:30 AM, I was back in her cold room.The nurses gave me an overview of the situation and said the neurologist would be in today as well as the cardiologist and the managing physician, who was actually a young resident, since this was a teaching hospital, other younger doctors would also be accompanying the specialists.
Deb was off the respirator but had a tube in her mouth and was getting supplemental oxygen. She was breathing on her own, but was still unconscious. The neurosurgeon had very little to say. He said we were in a very nebulous area with regard to Deb’s condition. “Let’s see where we are tomorrow.” Little did I know, this was a repeating refrain for the days to come.
Now the visitors to the room were Deb’s friends and again I witnessed the shock, sorrow, and fear in their faces; and I answered the same questions repeatedly as they arrived and wanted to know what happened, where it happened, and most importantly to them why it happened. Well, I could answer two out of three. With regard to the last, I had been interrogated with regard to what Deb was ingesting in the form of drugs and the like. There was no real link there. But what I knew was that Deb was under a huge load of stress taking care of her mother Josephine. Jo had been ill for some time having beat Hodgkin’s lymphoma stage 3 over 10 years ago. She was really suffering from immunocological disease and was becoming increasingly frail. Deb also so much disliked her job in the school district and that was taking it’s toll. Our marriage wasn’t exactly going well and I was a big part of the reason. This is just my story on the background, but I am convinced it is a real one. And our children also know.
Deb was a high type “B” personality. She wasn’t built for this type of stress. Her mother was the type of person that was really never satisfied with anything. In short , she was very demanding. And often times she was also very sweet and caring.. but she was dying and she knew it. Debs, sister Diane, seven years her senior, came in from Oregon to assist with the medical issues and to lend support.
Diane has been a nursing professional for 30 years. It was a lift I so desperately needed.
Days were passing and Deb’s condition did not appear to be improving. Tim, Alicia,and Kate were so worried as I was that we weren’t going to get their mother back.
Deb was now moving her right arm in a very strange and peculiar movement. Lying on her back with a that tube in her mouth and wires attached to her upper body, she would raise her straight right arm from her bed slowly up to a 180 degree position and then move bend her hand inward at her wrist with her finger tips and thumb touching each other and then slowly bring it back down. This would occur randomly during the day and night and appeared so primitive (as in primate), it scared me to think that she would be in this vegetative state forever and a day. The neurologist that visited everyday was explaining that this type of movement was not a particularly good sign as far as her brain function was concerned. I did not want to keep hearing this, so I told him not to come back; please send someone else from your practice. He was just giving his opinion based on experience, but I viewed it as negativity. I was pushing back from the unthinkable possibilities.
During this last week of September 2008, I came to this room in the CICU unit of the hospital everyday. In the evening , around 9 PM, the nurses would tell me to go home and get some sleep. I would leave and go to my musician friend Kenny H,s house and we would play our songs together, I, singing lead or 2 part harmony with him while he played his acoustic Gibson, and me harmonicas. Kenny is one fine musician stuck in the late 60’s 70’s. His hair is down almost to his waist and a thick gray. And he can write songs as well as play. My favorite is “Working all the time.”
Now every day in that hospital room, I would sing every song I knew acapella. This was about 100 songs and lyrics at the time that I knew by heart. I was just hoping that Deb would wake up and tell me to”Shut the ___ up!” The nurses by this time knew I was somewhat insane and would just smile knowingly as they came and went. Beatles, CCR, Neil Young, Carole King, James Taylor, Eagles, Benny King, Tom Petty, Jay and the Americans, and many more. I sang for hours. The week passed and Deb was still in a coma. The kids and I didn’t talk about it too much. We just knew she had to wake up. Family and friends would try to coax her, hold her hand and gently ask her when they came “Deb, c’mon and wake up,wake up.
She was still moving that arm up and down. That was the sign of hope on the edge of despair. I kept myself outwardly positive and inwardly fearful. It had hit me like a flying brick in the forehead, “Life is so precarious”

Young Rascals It Beautiful Morning, the birds are singing their own songs.,.

I woke up Monday morning and went downstairs to get my first cup of coffee. It’s September 20th 2008, the morning is so beautiful. A cloudless sky, dry air, and a slight chill in the air that would dissipate as the sun rose a little higher. The Cabana awning was still up on the deck keeping the table dew free and dry. “It’s a beautiful backyard and everything is still very green. “I love this yard.” I said to myself. Big bouquets of orange and yellow marigolds border our organic vegetable garden. It is still producing some tomatoes, Eggplant, peppers, cabbage. The 20 or so sparrows are flying back and forth from the thick cover of the leyland cypruses that border the property to the bird feeder just off the back deck where I,m sitting finishing my coffee. They make such a cacaphony with their multiple high pitched chirping. They seem so happy. ” I better go get Deb up,’ I thought. Deb always gets up allowing for just enough time to get to work. There was no sipping her coffee,and watching some news; its a “to go” cup for her. She has getting ready for work down to a science.
She works in the Amityville School district as a specialist in the special Ed department database development and maintenance. “Deb, you getting up”? “No, I don’t feel good. I have a headache, and I don’t feel right. Could you call them and tell them I,ll be in at noon please?” “Okay, I’ll do it now.”
So I went to my office off the living room. It was the old screened-in porch and we had it enclosed.The morning passed and Deb was on her way to work at noon.
At 12:35 the phone rang. It was Jodie Shapiro, Deb’s boss. “Tom, Deb is in an ambulance and on her way to Mid-Island Hospital; she collapsed in her chair at work and stopped breathing. She was very blue, she was defribbed and that’s all I know. It doesn’t look good.

My legs went limp. My heart was pounding .My throat became dry and tight. I couldn’t think. “But I have to think…”I told myself. “Call Alicia.” “Li, mom is in an ambulance. She suffered a cardiac arrest. Get to Mid-Island hospital. Do you know where Kate is? I’ll get Tim. I’ll see you there.” Driving to the hospital with Tim, who is 16, and hearing him praying for his mother’s life.”Please don’t let her die, my mom can’t die.” I’m constantly just telling myself “I have to keep it together, I have to stay with “right now”. ” My head is still talking a mile a minute. ” Your supposed to get on a plane tomorrow for Vegas for the Olympia show… What if Deb didn’t make it… Where’s Kate? We can’t find her. Oh God,”. Tim is shaking.. I was floating out of control with fear. I felt out of my body.
We pulled into the ER parking lot and the EMT’s were waiting for us. “She flat lined 3 times on us. We defribbed her and gave her everything we could; Atropine, Adrenaline, epinephrine. We really hope she makes it.” I thanked them and we headed into into the ER.” Where is my wife?” “Through that door to the right.” No questions asked, she knew who we were and she’s seen it many times before. Deb is on a gurney against a wall that was tilted downward with her feet lower than her head. She is hooked up to a respirator with tubes, wires all over her upper body. Her head area was enclosed in a clear view plastic tent. Her body was shaking uncontrollably. She was comatose. This is the cardiac stabilization area. The monitors are blinking and beeping in a steady rhythm.

It is cold and stark, like a storeroom it seems. Tim is sitting with his head in his hands leaning over a chair. I know he was relieved that his mom was alive. Her legs were vibrating as if she was hooked up to a battery. It was from the drugs. Alicia walked in and I could see the shock and disbelief in her face. The same thing went through me many times….”This always happens to some other family.” My brain was free falling. I was cracking. “Alicia, I’ve got to keep my shit together, I’ve got to keep my shit together.” “Dad, you will, you have to.” She was stoic. I am sitting on a bucket or something. This place feels like a garage. Her words bring me back from the depths. A man approaches me and introduces himself as the director of the hospital explaining that his hospital is only providing a cardiac stabilization unit. He explained that we were waiting on word where a space for Deb will be found; either St Francis or North Shore, part of Long Island Jewish chain. My three kids with Deb, Alicia 22, Kate 20, and Tim were all born here. “Where’s Kate?” “She’s on her way, Dad.”
I went outside and called John Morin, the owner of Inner Armour”, a sport nutrition company that I was working for. ” John, Deb collapsed at work. She had multiple cardiac arrests. I’m at the hospital where they stabilized her, we are waiting on word for bed in a critical cardiac care unit. She’s unconscious. I won’t be leaving for Vegas tomorrow. I can’t lose my wife and I’m so fucking scared.” A silence on the line that seemed awhile. “Tom, take care of your family. Call me later, please.” “OK, I will.” I understood how he felt.
Amityville is a small village and news travels fast. My phone was ringing and I took family calls and briefed them. Kate came in the front door of the hospital and we went to the refrigerated stabilization room. I am thinking about the kids….what they are going through. Kate and I go to receiving and she helps me with the paperwork. They tell us Deb is going to North Shore.. about 8 miles away from here. It is 3:30 PM.

I finish with paperwork in the receiving dept. at North Shore and move through the lobby to the elevators. This hospital is huge. It is a teaching hospital and the lobby is like a miniature indoor mall with Cafeteria, gift shops, chapel,etc. Upon reaching the CCU floor, I go through the big wide doors and down the hallway to Deb’s room. The room is about 15×12 and Deb’s Bed takes up nearly half the space. The kids are there, a doctor comes in and gives me the brief. “She is stable, her heart is only having very minor fribs, we don’t know what caused this, and we would like to ask you some questions to help us with causation, but not now; tomorrow.” I was on my own adrenaline.

I went over to touch her hand. It had warmth. She was still with us and also still unconscious which wasn’t the biggest concern for the medical staff at this time. We watched as the family members arrived in the room. When they saw Deb and all the equipment she was attached to, you saw the fear and uncertainty in their faces. Her brother Danny broke down and left the room returning a few minutes later with a red tear stained face. I felt it. All of it. We stayed late into the evening. It was time to go home. There was fear gripping my stomach, making me lightheaded. A lot of fear for my kids and Deb. Is she gonna make it?
Walking to the parking garage, I looked up in the sky. The moon was three quarters and waning. It was starting to smell like autumn.

“Why,why,why?” There was guilt. “Did I cause this?” We arrived home and there was food for us. Baked ziti, bread, salad. I drank Vodka to help me sleep. Tomorrow is another day.