The Winding Road
I slept fitfully again last night, waking up full of worry about what would happen with Mom. As usual, my normal wake-up time came, and then I fell into a deep dream-filled sleep, in my dreams, protecting Mom. The weight of my responsibility for her heavy on my shoulders and my mind. I feel like I am riding on an out of control roller coaster, being jerked one way and then the other by so many things.
As I was parking in the hospital parking deck, the representative for Hanover Home called me, saying that there was a problem with the supplemental insurance plan that we were counting on to pay room and board for Mom in Hospice, and asked me to contact the insurance company. It feels that there are so many details that need to click into place, and once I think I have something set, something else falls out of place in the house of cards. I know so little about the ins and outs of insurance and hospitals, but I am learning.
I went to Mom’s room to make the call and found her almost unresponsive, her eyes rolling back in her head, her mouth open. I panicked and called the nurse. Mom wasn’t on any medication- this was just her. The nurse seemed terse- perhaps a protective shell, or perhaps because I am so very sensitive right now. I am so sleep deprived that anything is possible.
I spoke with the insurance company, feeling like things were okay, and called the admissions person at Hannover Home. We had to re-fax the policy information to her again and wait. I was so happy to think we would have Mom in Hospice by the afternoon….until the phone rang again. The admissions woman told me the supplement that Mom thought all these years would pay for a year in a nursing home, would not help her now. I felt like I had been kicked in the stomach, the tears came yet again, and I could barely speak to the woman.
I worked to compose myself and went to find Glenda, the wonderful social worker who has been so kind. She took me into a consultation room, handed me a box of Kleenex, and listened to my sob-filled, broken description about what had happened. She held me tight, telling me to let it out, and said she would investigate our other options. There is no money to just put Mom in a place. Taking her back to our stair-filled home is not an option. Glenda told me that Mom has days, maybe weeks, left, and we needed to keep her comfortable.
Glenda then mentioned a Comfort Care there in the hospital. Similar to the idea of Hospice, the goal is to keep an end-of-life patient comfortable. I didn’t even know it was an option to keep Mom at St. Vincent’s Hospital, where she has been receiving excellent care. There was also the possibility that Mom could be moved to in-hospital Hospice care if the doctor felt it was appropriate after so many days…and, if her Medicaid comes through soon enough, we can also move her to a Hospice facility.
I went back to sit with Mom and hold her hand. The tears came freely, and my cell seemed to start ringing non-stop right in the middle of everything, friends and family wanting to know what was going on. I finally had to silence it- this was a time I needed to draw into my inner-strength, focus my energies, saving them to deal with Mom’s needs, as well as the emotional toll of this experience.
As I held Mom’s hand and looked at her, I felt the pain of loss begin to crystallize in my heart. It felt more real now, the discussions of taking Mom off of all unnecessary medications, using the BiPap only as needed for comfort, the talk of days left. I always thought that my mother would live forever. She’s always been so vivacious, so full of life. The reality has hit me once and for all…there will soon be no more “Hey Darlin” or “Love you, Neesie”. There will be no more time to hear stories, or giggle together, or drink milkshakes, no more wonderful Mom hugs. My heart felt like lead in my chest.
I have only had personal experience being with pets who are dying, never a person. I kept seeing the face of my dog Guinness, seeing his eyes as he passed. I thought about how painful that was, and how the pain of Mom’s death would be that pain multiplied by infinity. A pain I can’t even yet fathom, but will very soon have to face. Every fiber of my being shies away from that pain, but I have no choice- I have to be there with her, honor our love.
Mom perked up some in the afternoon, especially when Dan came to see her. She asked me to feed her some lunch, and asked again if she is dying, if we were saying goodbye. Each time, I tell her that I don’t know, but that it’s okay and not to be afraid. I will be here. The last gift I can give her, holding her hand as she leaves me. I can feel this experience changing me in ways I can’t describe, probably ways that I won’t understand for a long time. All I know is that I feel different inside.
A very special former student who is now a nurse, Emily, came to visit. Emily is like a daughter to Dan and me, and she and Mom developed a special bond when Mom lived with us. Em and I cried together, and she helped me move Mom’s things to her beautiful big room in Comfort Care. She then kindly sat with Mom while I ran home to take care of the animals and gather the things I would need to stay with Mom in her room. The true vigil has begun, and I have to be honest- I am so afraid of the pain that I know will come crashing down on me in endless waves.
My sister will be here a week from Saturday, and I so hope that Mom will make it until then. I can’t wait to hold my sister in my arms and for us to be with Mom together. Linda has worked with seniors at the end of life for many years. She knows what to expect, what to do. I, on the other hand, feel so clumsy and useless as a caregiver. I just do my best, and I guess that’s all I can do.
And so now I sleep on a horrible couch in Mom’s room that slants down, making me feel like I’m going to slide off. I listen to the sound of the BiPap machine, Mom’s occasional groans, the sound of a woman who shrieks down the hall. Hospitals are not places of rest, that’s for sure. Mom called to me at 2:30am, asking for water. I had the nurse remove the mask so that I could give her a few sips. Once the nurse left, Mom asked again what was happening, was she going to die? Again I told her that I didn’t know, but it would be okay, don’t be afraid, I will be here. She told me her chest hurt, and I called the nurse to give her some morphine. She is finally sleeping again.
The winding road stretches before me still, though now there is a light I can see at the end. I am a very spiritual person, though not religious, and I feel the room filled with angels, there to comfort my mother. I see the faces of the people Mom has loved and lost; Grandma and Grandpa, Aunt Sara, Aunt Robbie, Uncle Ernest, my brother Bud, sister Sharon, my dad, Mom’s special cousins and her dear friends, all waiting to embrace her and take her to the light. No more pain, only love. Always love.