East End Hospice, A Reflection

My mom was just 69 when she passed away. She’d spent the previous few years suffering from a rare form of Parkinson’s known as Multiple Systems Atrophy. We thought we were going to lose her early on when she stopped breathing and her nails turned blue one day at home and she was raced to the ER in Southampton from her house in the Northwest Woods of East Hampton. However, a tracheotomy helped her breath again and she rebounded enough that she was able to have some quality of life for a couple more years. By the time she passed she had, for better or worse, been in a nursing home for two years, but this was long enough to see her grandson grow up a bit more and to meet the man I eventually married (and to know that was probably going to happen). She got to make her peace with many, and I was lucky enough to have that time to tell her everything I wanted to—at least given the circumstances.

One day in late March I was visiting her after not having seen her for a couple of weeks, as I’d had bronchitis. While I was helping her into her bed, she whispered in my ear, “there’s something bad inside of me, something’s wrong and it hurts”—she wasn’t making sense, was very agitated and uncomfortable, and got angry at me for no real reason as I was leaving her room to get a nurse. The nurses came and found out she had 104 fever. Back in the ambulance to Southampton Hospital.

The next couple of weeks were a blur of her in the hospital, lungs full of fluid, severe pneumonia and her doctor fighting to try and get her to where she could breath without assistance and maybe have a chance get over the infection. One day I was having a very upsetting conversation with him about all they had done to help her so far.  Confused and upset, I finally said, “Well, should I be calling hospice or something?”

He sighed and said, “Oh, thank God you finally said that. YES. I don’t know how much longer she has, but you should call hospice. I’ll call them for you and have them come into the hospital.”

I said, “No, I promised my mother she wouldn’t die in the hospital or the nursing home but in MY home—I need to arrange to bring her home.”

What followed was my first real personal contact with Hospice personnel, and I will never forget how they guided me, calmed me and focused me for what lay ahead. At their instruction, some good pillows were purchased, a hospital bed arrived, a Hospice nurse stopped by. I went to see my mom and tell her we were bringing her home. She couldn’t speak well because they had to have the valve out of her trach to have the oxygen connected. I removed the tube for the oxygen and put the valve in at her request so she could talk, and asked her, “Are you scared? Are you mad? What are you thinking?” and she looked at me and said, with some difficulty but in a calm and loving tone.

“I’m thinking I’m going to miss seeing your face. I’m going to miss talking to you and listening to you tell me funny stories. I’m going to miss seeing you and your sisters and my grandson and family, but that’s all. I’m going to miss seeing you.” I left that Friday night feeling like the largest stone in the world had settled over my heart.

The next time I saw my mom, Saturday mid-morning, she was pretty doped up and still running a high fever, so very out of it. All she did was open her eyes VERY wide when she saw she was in my house, as if to say, “Wow, how’d I get here?” She was set up in my small open living room area, and two of her sisters and her brother were with me. My sister was due to arrive Monday and another aunt was flying in on Easter Sunday (the next day). The Hospice nurse gave us all instructions:  2X of anti-depressants every X hours, 1X of morphine every X hours, 2 crushed up aspirin in water every 2X hours to help keep her comfortable.

We all helped out for the afternoon, then I took the first shift at around 10 p.m. so everyone else could get some sleep. I was to be with my mom from 10 p.m. to 4 a.m., then wake my aunt. I sat next to her bed and sang songs she’d sung to me during my childhood, and at 11 p.m. I gave her the meds. Then at 4 a.m. I decided to let my aunt sleep, and I’d give my mom the meds again.

But I goofed up.

I gave her 2X of the morphine and 1X of the anti-depressants, switching the dose by mistake. I FLIPPED out. Scared and upset, I called the number for the Hospice nurse—I don’t remember her name but I knew her sister through the Sag Harbor School Board, as I recall. Anyway, she was very sweet. I sputtered and cried that I’d flopped the meds and given my mom 2X of morphine and 1X of the anti-depressant. The nurse said very calmly, “Ellen, it doesn’t matter. It’s okay. Don’t worry, its all going to be OK.”

Just her tone of voice made me stop and think… Oh, right… it really didn’t matter. I mean, we were here saying goodbye. It really didn’t matter.

I went back to my mom’s bedside and held her hand and started to sing a song—it was an upbeat tune she’d sung in a school play once. She winced and squeezed my hand. I stopped and switched to a lullaby and she relaxed and smiled and seemed to drift off.

That was the last direct contact of any kind I had with my mom.

My aunt came out at about 6 a.m. and found me asleep with my head on the bed next to my mom, and she and my now husband, David, made me go into my bed. I fell into the deepest sleep. I found out later that David asked to sit with my mom and he did, and he held her hand (she adored him and he her) and told her “Don’t worry about your daughter. I love her and will always take care of her.”

A few hours later, David came and woke me and told me my mom had passed. I went out to her bedside and found my aunts crying and my uncle standing there, frozen. I put my hand up to her neck for her pulse and felt none. I said, “She’s gone,” and bent down and kissed her.

My one aunt asked, “Should we call the hospital? An ambulance?  Should we have them come help her?”

I said, remembering what the Hospice nurse had said and trying to sound as much like her as I could, “No, it’s okay, this is what we’re here for.”

Both my aunts looked to my uncle as if to say, “Are we sure she’s gone?” Looking kind of confused, he reached over and as I had done felt for her pulse. He looked down and said, “She’s gone,” then looked at me and said, “Do you have any Scotch in that bar in the kitchen?” I nodded and he walked away.

We called Hospice again, and then, as when I first spoke with them, they took over and I went on autopilot. I don’t know what was said, but all was taken care of. The funeral home arrived, an ambulance came and took my mom, the bed was taken away, a nurse came and took the left over meds. I remember standing on my porch that Easter Sunday morning—yes, it was Easter Sunday—and talking to the nurse, this woman who’d left her family on Easter to come help us. She was just so kind.

When I think about Hospice, I think that in just a little under 48 hours they made an impact on my life I will never forget—the people were all caring, kind, efficient, almost invisible in some way but still so THERE. I don’t know how East End Hospice does it. I only know I couldn’t have done it as well, the way I wanted to for my mom, without them.