Mom's journey to Hospice; final stop--home hospice

After thanking the neurologist, I went to see my mom (and dad). By that time, it was late morning, but it felt like two days had passed since her admission, instead of less than 24 hours. My mom was sitting up in bed, comfortable and fully lucid. The massive steroids the neurologist had prescribed were doing a remarkable job of abating the pressure of the fluid on her brain. She could think straight, very straight.

I took advantage of the window of clarity. I told her and my dad about the CT scan and the MRI results. They both looked shocked, but my mom simply said, "Where are my babies?"

Even now, as I type this, I feel so emotional thinking of those words she uttered. I knew exactly what she meant and I acted on it. And I have to admit, it felt good to DO something, instead of being so passive, sitting around and waiting. We finally had all the answers we needed and I knew exactly what she intended with her comment -- I was to call in the troops and bring the whole family together. I called each of my sisters. I called my ex-husband and his wife, who had my older two children for the summer. In the span of 6-8 hours, we would have the following people arrive at my mom's hospital bedside: my husband, older sister, younger sister and her baby girl, my older son, my daughter, my younger son, and our babysitter. My brother in law joined us a couple of days later. My mom was clear that she wanted to kiss and hug and enjoy everyone before she died.

Heartbreaking though it was, my mom also used the time to call her best friend, who lived in Israel. The phone conversation still wrecks me to this day. What a gift to be able to say goodbye, but how devastating to have that knowledge. All I recall from listening to part of that conversation was my mom crying (she was NOT a cryer) and saying 'I love you' over and over.

MEETING WITH HOSPICE

As soon as my sisters arrived, we arranged an in-hospital meeting with the Hospice Coordinator. The hospital knew there was nothing more they could do for my mom and they were anxious to discharge her. The Coordinator first said hello to my parents in my mom's hospital room and then suggested that my sisters, husband, dad and I find another room where we could talk. Close by, there was an empty room, and we found some chairs to sit in. The Coordinator laid out the hospice plan and said hers was only one option, we could look for others.

It was nice to have options, finally, but we had no strength for 'shopping around'. We all agreed we wanted the services she was describing and wanted to know the next steps. It felt really good to be taking action even though it was a sad action, because from that meeting, we needed to act. We actually had tasks to accomplish.

We decided right away that mom would not go to another hospital with a hospice ward. She would be discharged to my house. In fact, we were all staying in my house: my sisters, kids, niece and brother-in-law, my dad, my husband and myself! The Hospice services would include providing necessary equipment such as a hospital bed and a bedside commode. First step, however, was to find the space where all this equipment would go. My husband and I agreed we would set my mom up in our office. It was on the main floor, had a small closet, big window and a door for privacy.

First order of business, then, was to clear out the office of all of its furniture. We returned home shortly after the hospice meeting and all set to work moving and relocating the furniture and office supplies. The bed and commode were scheduled to arrive soon, and my mom would be discharged the next morning by 10am. I also ran to Target to purchase things I thought my mom would like, such as fresh towels, pillows, and lotion. What does one buy for someone who is dying? It didn't even occur to me to go onto the internet and find an online community for support. I had my family around and we were too busy supporting each other and my mom. I was in full-on reaction mode unable to take a breath and reflect or even ask myself how I was feeling. It's a weird place to be in emotionally and mentally; and it is not conducive to problem-solving or thoughtful reflection.

Second order of business was another odd one, rather out-of-place in this whole story. My husband and I had planned a trip to Europe and my parents were supposed to help watch the kids while we were gone. So overwhelmed were we, we didn't even know where to start with cancelling our extensive tours, trains, hotels and planes. Plus, my mom had other plans.

Still in her 'clear-headed' mode from the steroids, my mom settled into the oofice/hospital/hospice room in my house fairly easily. I vividly remember her asking my dad for her purse. She had prepared a $500.00 check to me for my birthday so that I could use it on vacation. She looked me dead in the eye and said, "You're going."

I felt like it was her dying wish that we go on our long-planned adventure, and despite my trepidation, my husband and I left on July 21, 2014 for Europe. My sisters and dad weren't thrilled with us leaving, I could feel that. Knowing that so many people were around, including the babysitter, who was so helpful with cooking and cleaning (she didn't have to do all that she did) made it an easier decision. Ambivalently and with heavy hearts, my husband and I made it 6 days before cutting the vacation short and returning.

Each night of those 6 nights, we would call home and FaceTime with the family. Soon after we left, mom went downhill fast. My sisters were busy taking care of the kids and my dad and my mom. They must have felt totally overwhelmed by the tasks of care along with my mom's rapid decline. The hospice nurses were helpful, if a bit rough around the edges at times. My sisters were trying to please the nurses, attend to my mom with medicine to ease her pain and provide general comfort as my mom stopped eating, resorted to diapers for toiletting, and started to slip into a comatose state, no longer responding or opening her eyes.

At any rate, my husband and I arrived at the second stop on our trip, Amsterdam, and concluded that we needed to return home as my mom was going downhill too fast. We had spent two nights in Cologne and were on our second night in Amsterdam when we reviewed our options for return flights. By some miracle, we did find an option that allowed us to leave from Paris (our planned next stop) and fly direct, first class, to Chicago. There was only one flight, leaving first thing in the morning the day after next that would work and we snatched up the last two seats on it using our frequent flyer miles. The option had us leaving Paris early on July 28.

The vacation was memorable but definitely not enjoyable. I cried every day, twice a day, so buoyant was my mourning, sitting and bobbing just barely below the surface. To help with our grief, we lit candles in ancient churches, said prayers while touring and basically prayed for the miracle of more time with my mom.

It was also heartbreaking to FaceTime with the family and see the devastation in the eyes of my dad, my sisters, and my kids. No one can enjoy the sites and sounds of a vibrant city in the midst of so much sadness and devastation, nor, at my core, did I want to.

Flying west, we gained plenty of time and were back at the house just after 1pm on the 28th. The babysitter's 9-year-old son was at the house sitting with my mom when he saw our taxi in the driveway. He apparently told my mom that we were home. Imagine her mostly comatose in bed, be told by a young kid, 'Mark and Melissa are home.' It was a funny thing to tell her.

Still, my mom responded. She started mumbling and her eyes started fluttering. Apparently it was the most responsiveness that she had shown to anyone or anything in over 48 hours. The babysitter's son was thrilled. He told us repeatedly, "See, Oma knows you're here! She's waking up!"

Well, she wasn't quite waking up but she did demonstrate a level of responsiveness to my presence and my husband's. We were prepared for how she looked as my sisters had primed us for how poorly she was faring. My dad looked beyond exhausted. He was only a ghost of himself walking around. Not eating much. Not talking much. I sat with my mom for a couple of minutes and I found I had nothing to say. Totally numb, I felt at a loss for words and emotions. I left the room after only a short time. Now, I wish I had stayed.

The hospice nurse was scheduled to come the next day but had already warned the family that my mom was close to the end. My older sister, surprisingly, left. She announced that she had booked herself on a flight leaving that afternoon for California. She called a taxi and was gone. The last thing I remember her saying was, "I have said my goodbyes to mom. I am done watching her die."

My brother-in-law had also returned to Arizona during the time I was gone. Left behind were my younger sister and her baby daughter, my dad, my husband and my three kids. Now we would simply wait for mom to die.

The hospice nurse came fairly early the next day. This was one of the cheery, warm ones. She repeated that my mom had very little time left and she coached us on what to do: give her plenty of morphine, some medicine to ease her breathing, which was labored and rasping, and show her physical affection. "Don't stop talking to her or touching her. It is thought that a sense of touch and hearing are very reassuring and comforting to the dying person. You really can't overdo it."

I took the advice to heart; however, no poetic odes of devotion or appreciation came from my mouth. I found instead that I could rub my mom's feet and legs, while making the smallest of small talk, commenting on the kid's whereabouts or other insignificant stuff. Her breathing became very, very labored in infrequent and we knew from the pamphlets the Hospice Service had given us and details the nurses had reinforced, this sign, coupled with her unresponsiveness and her amazingly slow heartbeat, marked the end.

My husband and two younger kids sat in the family room, watching TV; my oldest son was at marching band practice; my dad, my sister (with her baby nursing in her arms) and I sat around my mom, stroking her arms, legs and feet, encouraging her to go. 'It's all right," we told her. "It's okay to go. We love you and we will be fine. You're okay. It's okay," we sobbed as all three of us adults took turns urging her go make her transition.

It was a weird, unnatural experience and I guess I will never know in this plane of existence if it made a difference. I would like to think that it did.