Before the Silence: A Two-Part Narrative on Loss, Alzheimer’s, and Hospice

March 2016

Part 1: The Last Week Before My Dad Died

The Monday before my dad died, the hospice nurse told my mom, “Henry’s dying.”

She said she had noticed a change in his breathing.

“Hospice nurses know these things,” Mom had said.

They are trained to see the signs.

Mom called me and my husband and I rushed down to my parents’ house in Reno.

“Oh, God, here we go…give us strength,” I silently prayed as I prepared myself for the worst.

When we arrived, I stared wide-eyed at Mom and gave her a hug.

The smell of urine and bleach hit me as she opened the door. She looked like she hadn’t slept in days, much less gotten a haircut.

As his full-time caregiver, she had been coordinating a parade of hospice workers, each of whom only showed up for a few minutes to check Dad’s vital signs and to fill out stacks of paperwork.

Nobody could stay long enough to really give her a break.

And it showed.

“Where’s Daddy?” I asked.

“He’s sleeping,” she said.

I walked quietly into the master bedroom where Daddy was snoring. He looked very much alive.

My husband, Steve, joined us.

Dad woke up.

“Henry, can you sit up?” Steve asked.

Steve adjusted the hospital bed so Dad could sit up more comfortably.

Dad had to go to the bathroom but wasn’t strong enough to get up and walk to the toilet himself, so Steve helped him out of bed and onto the commode, then back to bed.

Shortly after, a nurse and her supervisor, the owner of the hospice organization, arrived.

The hospice nurse explained that Dad’s blood pressure was very high. His face had flushed red.

“Would you be open to giving Henry liquid morphine?” she asked my mom.

Mom cleared her throat and then replied: “Is it really necessary? We don’t want to experiment on him. In the past, some medications had aggravated his Alzheimer’s. A few nights ago we had given him something to help him sleep but he did anything but that.”

“May I take his blood pressure?” the nurse asked.

“Yes,” Mom replied.

The nurse disappeared for a few minutes while her supervisor explained to my mom that there would be no need to consult Dad’s regular primary care doctor about administering medications.

The hospice doctor would be the one to prescribe medications now, if needed.

Dad had been with this hospice company only a few months.

Several months before, he had been with another hospice agency, and they had discharged him prematurely, without warning to my mom.

The discharge doctor had the nerve to give the order without Mom present, while Dad was at an adult daycare. The hospice agency had tried to take away the safety equipment Dad had used to shower each day, as if his condition had miraculously improved overnight and he was cured of Alzheimer’s.

Mom had refused to let them take away his safety equipment and filed a complaint against the doctor who had given the order to remove him from hospice.

That doctor had not even met Dad prior to the date she had decided to discharge him.

Mom had gone from getting hospice support three times a week to nothing.

She had reasons to mistrust doctors.

The nurse returned and reported her findings.

“His blood pressure is 188. It’s very high. He could have a stroke. I think we should give him the liquid morphine.”

Mom agreed and retrieved the morphine from the fridge.

The nurse returned to the bedroom where my dad was still snoring and woke him up.

“Henry, we’re going to give you something to make you more comfortable,” she said. She inserted the correct dosage into the plastic syringe dispenser and squirted it into his mouth, on his tongue. She explained that it would dissolve on its own.

Dad’s color immediately seemed to improve.

“You can give this to him as needed, up to every 10 minutes,” she said.

“Henry, are you hungry?” she asked.

“Yeah,” Dad said.

Mom retrieved some sweet potato puree from the fridge and handed the bowl to the nurse

“Open,” she commanded.

Dad complied.

By 3 p.m. Dad was sitting up in bed, eating, and responding to questions. He didn’t look like a dying man. The nurse and her supervisor left, and so did Steve and I.

Thursday

I returned on Thursday so Mom and I could figure out what kind of coverage Dad needed.

He did not have Medicaid, so we had been paying for at-home care out of pocket in addition to the hospice services through a locally owned organization.

He had suffered from Alzheimer’s for 12 years, but the past month or so his condition had worsened.

A company that provided senior care had sent a woman who professed to have over 25 years of experience, but her first night on the job she had fallen asleep.

Mom had found the lady snoring on the job. Livid, Mom told the lady that she could go home early, even though she was supposed to cover the entire night shift.

Thursday afternoon, to my surprise, my dad was sitting up, draped in a sheet, at the kitchen table in his diaper.

The chaplain and our 80-year-old respite care volunteer, plus my mom were sitting with him.

The volunteer promptly left after I arrived so it wouldn’t be too crowded at the table.

Apparently Dad had gotten up on his own and surprised everyone by coming to the table moments before. They told me they didn’t think he had the strength to get out of bed.

When the chaplain asked who I was, Dad said, “My sister.”

That was the first indication to me that something was really wrong.

Dad’s sister, Nancy, had passed away years ago from breast cancer.

Normally he recognized me.

The Alzheimer’s had taken away many of his motor skills, such as how to shave or tie a tie or how to discern the bathroom from the closet, but on a regular day, he knew us.

I’ve been told in the past that I looked like Nancy.

Grandpa Henry used to mix us up, too.

“No, it’s Gina…your daughter!” I told Dad.

I joined the chaplain, Dad, and my mom at the table and we began a long discussion about Mom’s burnout and possible options for coverage.

Dad used to be able to spend time at an adult day care, but lately he was too shaky on his feet and prone to falling.

My mom was uncomfortable leaving him alone.

At that time, I worked from home but lived an hour and a half away. Also, I couldn’t lift him and didn’t have the training to change him if needed. We decided on a company that could cover the nights and Hospice could check in during the days.

Dad reached for the teacup of water in front of him but immediately spilled it all over his sheet.

Mom told me he needed assistance drinking water, and we had to give him water with thickener.

Mom got him a dry sheet, and he told us he wanted to go back to bed.

That was the last cup of water I saw him drink.

Dad went back to bed and fell asleep.

The chaplain asked for permission to pray with Dad.

The chaplain recited, “The Lord Is My Shephard,” and anointed my dad’s head with some olive oil that Mom had retrieved from the kitchen. Dad flinched a bit when the oil touched his forehead, but he was already back to snoring.

By morning I had pulled an all-nighter, so I decided to go home and get some sleep. I was too tired to drive home.

My husband and the best-man from our wedding came to pick me up and drove my car home.

Friday

Friday evening I returned. Our friend from church who is a nurse, miraculously showed up between hospice shifts.

Dad’s diaper needed to be changed.

Our friend asked my mom if it was okay if she changed my dad, and we agreed.

Dad smiled at her and laughed at her cat jokes. 

She explained to us that we could give the liquid morphine up to every 15 minutes as necessary.

She also said that after about six days of no food or water, renal failure occurs.

Dad’s regular Personal Care Aid (PCA), whom we had privately hired and who normally gave Dad his showers, was able to cover the night shift, 8 p.m. to midnight.

Mom went to sleep in the front room, which had been my room growing up.

We could tell she hadn’t had a good night’s sleep in days.

But she trusted the PCA and more importantly, Dad liked his main PCA, so I stayed up during the night shift with her to help watch over Dad.

He slept the entire time, from Midnight to 4 a.m., so I chatted with the PCA during that time while she prepared some tuna fish for Mom to eat later.

The PCA also helped with cleaning. She had really stepped up during the past few weeks, as Dad’s level of care increased.

Dad’s PCA had been at my wedding in September 2015, but this was the first time I had really had a chance to talk to her.

She was actually only a few years older than I was, so it was almost like having a slumber party. She told me about her more difficult Alzheimer’s patients, about her husband and son, and about her adorable little baby boy (she had been pregnant at my wedding but still came to make sure Dad would get through the evening’s festivities okay).

She told me about the time when Dad laughed his head off because she got sprayed with the shower hose by accident during one of their bathing sessions.

She told to me about the time when she came to shower him one day. He had asked her what was wrong, because he noticed that she usually was much more chatty during their visits.

Dad may have had Alzheimer’s, but it was obvious he still cared about the people around him.

***

After she left, I stayed up for the next shift, midnight to 6 a.m.

This time a new girl from the at-home agency came to stay.

She remained quiet for most of the night.

I felt exhausted, but I stayed in the master bedroom with her and Dad and couldn’t sleep anyway but listened to his snoring.

His diaper got changed once, but the diaper changes had become less frequent since he had stopped taking food and water.

Saturday

My husband came by on Saturday morning and told my mom that we should swab Dad’s mouth with the water and thickener.

Occasionally Dad would suck on the swab with water. He must have been thirsty.

My husband was able to sit Dad up in bed.

Dad didn’t seem to remember who my husband was but did say “Yeah,” after he asked him if he wanted to sit up more.

By Saturday evening, Dad had developed a cold sore on his mouth, which had burst and was bleeding onto his teeth and tongue.

He was snoring still but his mouth was dry and caked with what looked like dried saliva.

I texted my sister and told her Daddy was bleeding into his mouth and to please come after work.

My sister arrived that evening and so did a male hospice nurse.

He explained to us that he didn’t expect the thrush mouth to clear up.

Thrush mouth is like a yeast infection in the mouth.

My half brother’s wife, who is a pediatric cardiologist, had advised us over the phone that antibiotics could be given for thrush mouth. An IV would have helped with the dehydration, but hospice did not order one.

We were swabbing Dad’s mouth with the water and thickener and with Nystatin with Lidocaine (the same stuff they give you at the dentist to numb your mouth).

Dad was still snoring and did not wake up while my sister and I stood around the bed and listened to the hospice nurse’s instructions.

We asked him how long Dad had to live, and he told us there was no way of knowing.

Dad had not been able to swallow food or water for three days.

The hospice doctor had ordered a blood pressure patch, which the nurse explained was to keep Dad more comfortable. At this point the nurse told us that a stroke might almost be merciful because it would end quickly.

The nurse left and so did my sister.

I decided to stay the night.

Sunday

My husband had brought the air bed for me and had inflated it in the living room.

Another caretaker arrived Saturday evening and diligently began swabbing Dad’s mouth every 10 minutes while Mom and I tried to get some sleep.

Sleep was impossible, but I stayed up in bed trying to read my book till around midnight.

It was Sunday, March 13, 2016. I wrote in my journal a little, hoping it would help me sleep, but it didn’t.

I took my holistic sleeping pill but really couldn’t fall asleep.

At 1:11 a.m., I heard my mom get up and phoned the hospice nurse.

I could hear the wind and rain beating against the living room windows.

For most of the night I could hear my dad snoring over the rain from the other room.

Now I didn’t hear him at all.

My heart started to pound, and I got out of bed and joined the caregiver and my mom in the master bedroom.

Dad’s breathing had changed.

His breath rattled, and then there would be a long pause, and then three hurried breaths.

His head rotated slightly with the three catch-up breaths, and then there would be another long pause before the next deathly rattle.

I started counting the seconds between pauses, silently reciting the compassion mantra I had learned at an all-day meditation retreat (the Mindfulness, Stress-Reduction Program I had taken on campus a few months before):

May you be safe, and protected.
May you be free from suffering, and the causes of suffering.
May you live a life of kindness and ease.

The hospice nurse had previously told my sister and me to read the hospice book about the signs that occur before death.

Mom asked me to read the hospice book to her, so I started reading aloud.

It said the breath would rattle and the pauses would get longer.

Sometimes the dying person would run a fever. They say that hearing is the last sense to leave a person, but I hoped he couldn’t hear me reading about the signs of dying.

Dad’s fever hit and his cheeks flushed.

Mom hurried to get a cold face cloth to cool his face.

She brought in a fan, put more water into the humidifier, and held his hand.

“We love you so much,” she whispered.

“I love you, Daddy. It’s okay,” I said.

Then he took his last breath.

We waited for the next one.

The caregiver took his pulse and quickly confirmed that she could no longer hear his heart beat.

His temples sunk in.

His coloring paled.

Silence.

I could feel a peace now that the labored breathing had stopped.

It felt like God was with us.

“Oh, Henry, Henry! No.” My mom cried.

She was hugging him and holding his hand.

“His hand is still warm,” she said. She stroked his head and sobbed.

They had been together over 36 years.

I recorded the time of death in my notebook where I had previously written the times I had swabbed his mouth.

He died at 2:44 a.m.

“Call hospice,” Mom told me.

I had no time to feel anything.

I snapped into administration mode. I had a Masters in Educational Administration, after all.

I quickly exited the master bedroom and called the hospice line to report Dad had died.

They said they would send the nurse. Then I texted my sister.

No response.

I texted again.

Then I called.

Finally I left a message.

I texted my husband, who was still sleeping.

I called my half brother, Dad’s son. He was the first to pick up. He said he would tell our other sister.

I called my half brother, my mom’s son. He picked up. I described what had happened. He kept saying “God bless …”

The hospice nurse arrived after the caregiver left. He went about collecting Dad’s medications, including the liquid morphine, and put them into a plastic bag with dish soap to dissolve the unused pills.

Then he called the on-call mortuary, because we had not yet made arrangements where Dad would be cremated.

Two young men in black suits from a funeral home arrived. One handed me a business card.

They needed an identification bracelet for Dad.

The hospice nurse was going to write it on a post-it, but Mom found an old hospital bracelet from one of Dad’s previous hospital stays.

The men from the funeral home informed us that we could have a chance to say goodbye to Dad after they loaded him on the stretcher.

Dad was covered in a quilt, but already looked like a corpse and not my dad.

His fingers looked shrunken in to the bone.

My mom held his hand and cried.

His pale mouth was still open. We tried to shut it but rigor mortis had already set in.

I didn’t want to touch him.

Instead I rubbed mom’s back and cried quietly.

We told Dad we loved him and the men covered him with the quilt and wheeled him out the front door.

Mom and I watched as the men from the funeral home loaded the stretcher into their van and drove away into the rainy darkness.

That was the last time I saw my dad.


Part 2: Write Your Memories

1/7/17

Nearly a year had passed since that rainy night, but the fog of grief hadn’t lifted.

The coordinator of the bereavement programs at the hospice agency gave me a workbook of resources on self care after losing a loved one.

It took me a while to read through the print-outs, but towards the back of the workbook, the topic turned to journaling.

I underlined this statement: “write out all the positive experiences you can remember that include your loved one” (www.griefshare.org).

At first it was difficult to recall happy memories of Dad.

Seeing him die was so traumatic that for months I had nightmares.

One in particular, I dreamed that he woke back up from the dead, only to resume that horrible, suffering breath. I could hear his rattling breathing, that unnatural rhythm, and could almost smell the stench of urine in my dream.

I had read a Bible verse that in the end there will be no more suffering and no more tears.

In my nightmare, that wasn’t the case. I felt unsettled for days.

I consulted my Bible to reassure myself I read the verse right: “And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away” (Revelation 21:4).

***

One of my online marketing clients had worked with Veterans to clear trauma. He used a technique called Psych-K.

He offered me a free 30-minute session, which I accepted.

Although I had done eight sessions with a local grief counselor, the sessions felt draining, and I had suffered through a period of insomnia and grief during the summer after losing Dad.

The counselor and I met over Skype and he explained to me that Psych-K works with the left and right hemispheres of the brain.

It is a technique where you “download” statements and clear the trauma while you cross your left ankle over right, and cross your right hand over your left, clasping your fingers and holding them against your chest.

I had never seen the technique before and wasn’t sure what to expect. He explained that the feelings may intensify at first after repeating the statement to yourself silently, but if you wait, you can feel a release.

After that, you hold your fingertips together and keep your eyes down to “set” the new feeling and clear the trauma.

Tears rolled down my cheeks during almost the entire first session, but afterwards, I could feel a physical release.

I bartered for several more sessions until I began to feel more like myself again, absent of Dad.

During one session, the counselor asked me what I believe happens to people after they die.

I told him that I believe that the dead sleep. The Bible says that the dead know nothing, and that they sleep, so I don’t believe that Dad’s spirit is still conscious about what goes on here on Earth. I did not believe that he lurked about in the room where he died.

I felt he was at peace and that when Jesus comes again, we would be reunited.

The counselor asked me if that gave me comfort, and I said I guessed so.

None of us really know what will happen after we die.

***

One of my earliest memories of Daddy was him dancing with my sister to “Fraggle Rock” when the Muppets were on TV.

I think she must have been four years old. Maybe I was two years old.

But I can remember Dad holding her by both hands, their arms outstretched, dancing in circles, singing, “Dee, dee, da, dah, dah, dah, dahhhh, dee, de, dah, dah, dah, dahhhh…”

Some people are tired and grumpy after work.

Not Dad.

Even after working long hours required of a structural engineer, he had the time to dance to the Muppets theme song with his little girls.

Postlude: 10 Years Later

June 2026

Ten years have come and gone since my dad passed away. I still have bad grief days, and I still miss him daily.

There is no statute of limitations when it comes to grief.

The painful memories and the happy ones blur together in my dreams.

The Bible promised a world with no more sorrow, pain, or tears.

For a long time, I wondered how I would ever stop grieving.

The answer, I’ve found, was hidden in the very exercise that hospice workbook gave me: rewriting the memories.

By choosing to actively remember his laughter, his care for his aides, and his absolute joy during those Fraggle Rock nights, I stripped Alzheimer’s of its power to define his end.

My dad has been sleeping peacefully for a decade now, conscious of nothing on this earth.

But I am conscious of him.

And every time I think of him dancing, I am reminded that love isn’t buried—it waits.

He’s going to be the first one I hug in heaven.