My dad in hospice at home, talking to my daughter – September, 1989

The other day I received a telephone call from Carol, the hospice nurse who was assigned to Michael’s case in May, 2017. Michael wasn’t in hospice for very long, just about eleven days. During that brief time, I developed a fairly intimate relationship with Carol, who entered our lives at that impossible moment when a family has resigned itself to the fact that the death of their loved one is imminent. That she still calls me to chat is one of the unexpected positive byproducts of that fraught experience. Carol’s call brought back lots of memories to me. Michael’s last days weren’t my first experience with hospice. Back in 1989, after only a three month wrangle with bladder cancer metastatic to bone, my dad entered hospice for his last few weeks of life. At the time I was thirty eight years old, reeling from the fact that both my parents had been diagnosed with cancers within five weeks of each other. My mom, always the less healthy one, survived this cancer, her second one, and lived for another twenty-five years. My dad couldn’t tolerate his treatment and after only one round of chemotherapy, and despite the fact that the cancer hadn’t spread, opted out of life, asked that his funeral arrangements be made and went home to die.

My mom after her cancer surgery, 1989.

I don’t think anyone in our family had realistic ideas about the practical aspects of hospice. The departure from active participation in trying to stay alive meant that life would go forward in my parents’ home without any further doctors’ appointments or visits to the hospital. A nurse would visit every few days to take vital signs, answer questions and provide medication we could administer for comfort care. The nurse was a liaison between the formal medical setting and our family. The professionals were still out there but we were in charge. Despite knowing that the daily decisions about meds, food and everything else would be the family’s responsibility, the actuality of adapting to that total caregiver role was really overwhelming for my mom. For me and my younger sister too, the siblings who lived nearby. I had a job, two young kids and a husband, who in the midst of my parents’ issues, was recovering from a siege with a herniated disk and ultimately, a back surgery.

My younger sister and me with dad.

The first few weeks of dad’s hospice time were relatively uneventful and my mom was able to manage their situation with support from me and my sister. But then dad’s pain medication made him groggy in addition to suppressing his appetite. The weakness that set in as he detached from nourishment eventually changed his status from mobile to bedridden. Next came a commode which ultimately would be followed by diapers and a catheter. A fall which required me to tear out of work in order to help my mom get my dad off the floor, was the catalyst for moving a hospital bed with guardrails into the spare bedroom. All these changes. The brief nurse visits could hardly prepare us for the devolution of dad from husband and father into a fragile, helpless person, soon to be wholly unmoored from the life that came before.

Dad and me, 1976.

Volunteers came to visit, to be helpful. For the most part these well-meaning people were not a great match for anyone in our family. No screening was involved to determine whether they shared values and beliefs similar to ours. As a result, we experienced friction and alienation at a challenging time. An aide whose job was to provide bed bathing and general hygiene service, shaved my dad’s mustache off before we had a chance to tell her that he’d had one for the majority of his adult life. What an alienating moment for us, although his body grew that hair back before he died. Ultimately we opted out of visits from the hospice staff, choosing instead to only be alienated from each other. I write that with irony. Each of us family members brought our own ideas and emotions to helping care for dad. Despite our common background, we didn’t always agree on the way things should go. Our individual paces for adjustment were highlighted in a time like no other in our past experiences as a family. I can still recall making the leap from the normal boundaries between daughter and father to suddenly changing his diaper as if he was an infant. I remember thinking that the shock of a sudden death did not make the same demands on a person as having a loved one in hospice care does. Some people will never know the psychological permutations we had to make during those weeks. At one point my mom wanted to take my dad to the hospital. Reminding her that would violate his wishes changed her mind but the truth is, his hospice enrollment had removed that option anyway. She was simply too overwhelmed to remember that. When I became a parent I crossed from one type of adulthood into another – when I cared for my father’s body, while advising my mother, I went further into grownup life than what my parenthood had required of me. My siblings had their own version of these startling changes, bringing their personal spins to each challenge. We made it through everything, up to and including dad’s death. But hospice wasn’t simple nor was it really peaceful until the very end of dad’s life.

Dad and me in better times.

When Michael’s turn for hospice arrived twenty eight years later, I was obviously marginally more prepared than I’d been during my caregiver time with my dad. My mom’s physical and emotional limitations required me to do a level of caregiving with dad which I desperately wanted to spare my own children. For the most part I was able to manage that, mainly because I’d had considerable practice at maintaining the parent/child boundaries that had crumbled in my family of origin when I was only a teenager. I didn’t spend a lot of time bemoaning my early responsibilities. I just didn’t want my kids to repeat my experience in their lives.

Shortly before hospice – Michael with Rosie, his beloved cocker spaniel. She would be farmed out to friends for awhile when taking care of Michael consumed all my time.

Michael had been in remission for over a year when he suddenly began exhibiting confusing behavior. After a month of negative CT scans we finally were able to get a brain MRI which showed widespread cancer throughout his brain tissue. With only a few weeks’ life expectancy, his drive for life was so powerful that he underwent whole brain radiation. We spent almost 5 weeks in the hospital, from February to early March, 2017, before finally being able to go home. He was never fully himself again, alternating between short periods of lucidity, confusion and forgetfulness. Amazingly he regained some physical strength during April but the the cancer rollback from the radiation was brief with a steep decline on all fronts beginning in May. As days passed, life grew more challenging as both his cognitive and physical skills declined. All these changes spooled out between visits from home health care personnel, still drawing blood, taking vitals and encouraging physical therapy. Still a very tall and heavy person, Michael became more and more difficult for me to manage. Making the decision to enter him into hospice was particularly hard as he still maintained a deep desire to survive, coupled with an inability to retain understanding about the severity of his situation. Watching the person you love best disappearing in front of you is deeply eroding. After spending decades as partners in planning, having to make that choice was incredibly painful for me. But finally I did it.

Before Michael’s steep decline, a bit of time with our oldest grandson.

May 17th, 2017 – It’s not every day that you sign your husband up for hospice. No more doctor’s appointments. No ER. No more bloodwork. No more home health visits. Just watching and waiting for death to come.

At home in hospice. Michael’s hair never grew back after whole brain radiation.

When Carol the hospice nurse came to introduce herself and drop off supplies and medication, she talked with Michael and me together, and then to me alone. She’d quickly assessed our situation, giving me helpful guidance about deciding when and how to proceed with medication which might keep Michael calm and relaxed. The first days of that time were still hugely difficult. Trying to keep Michael safe and comfortable was a 24 hour job until the time came when he was no longer mobile. He continued to attempt behaviors his body and mind were not capable of performing. I was frightened a lot of the time. My kids came to stay with me round the clock for the last days of Michael’s life. I was able to keep them from having to parent their dad, but rather to love and grieve him as his children which was so important to me. By the time he died, I was beyond mental fatigue and utterly physically drained. We all felt that Michael never made peace with dying so those beautiful moments we’ve all seen dramatized in movies weren’t part of our hospice experience. On the day Michael died, Carol wasn’t the nurse on call, but she showed up anyway, informed by her coworker that Michael had passed. Although I have no military experience, I imagine that the bonds forged under fire must be similar to what happened with Carol and me during this end of life process. Her popping up in my life throughout these last six years is, I guess, a testimony to that connection. I haven’t sat back to relive those days in awhile. After getting these thoughts out I’m again going to set it aside. Those memories are never leaving me.

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