Editor's note: Last year when our mother became ill, my brother Rick travelled to Florida to look after her. This is his account of her final days.
In the summer of 2023, my mother died. She was 93 years old, as was her boyfriend, Glen. They lived together in Florida; I in Illinois.
A month before her death, Glen called to tell me Mom was in the hospital. I hurried down to Florida to offer what help I could.
I wrote the story of what followed as a series of text messages for concerned relatives, and, eventually, for myself. They are recounted here with little revision, mainly as needed to make them accessible to a wider audience.
I began this writing on the train ride back to Illinois.
The train ride home
Before Mom died, I told her that I would move her back to Illinois where I could care for her. We agreed that we should travel home by train. And that is what we are doing. It just didn’t seem right to stow her ashes in an overhead bin or in the luggage compartment of some airplane. And I wanted this time with her, this last trip, to honor the love she had always shown me.
Along the way, I thought Mom and I might document the experiences we had in her last month of life. The story will be about her, told, of necessity, through my experience of her final days. And so, it is my story as well.
I’d like to begin with my two favorite experiences. On several occasions when Mom would first see me as I came for a visit in the nursing home, her face would break out in this remarkable smile, as they say, from ear to ear, and her mouth wide-open. She looked as if she had just opened a much longed-for Christmas present.
Better than the smiles, on one occasion, out of the blue, Mom said, “You’re wonderful,” in a way that made me think she meant it through and through.
It is memories like these that give life meaning. But then, I’m not exactly sure she knew who I was. More about that later.
The hospital
The best place to begin is at the beginning. I flew down to Florida because Glen said Mom was in the hospital. Glen and I visited her three times on three separate days, and she was out of her mind with a Urinary Tract Infection.
Mom did not know where she was. She did not recognize nurses as nurses or doctors as doctors. She was utterly miserable.
On the first afternoon she repeated these words over and over again for literally hours. “Just thank the people. Tell them that we’re leaving.” Occasionally this would be punctuated with, “I hate this place.“ Also occasionally she would say, “I just want to go home.“
Once a nurse’s aide came in to tend to a personal matter with Mom, and Glen and I left the room. Mom screamed at the aide for it must have been more than five minutes. Glen and I just stared at one another.
Later, I asked Mom what she remembered about the hospital. She didn’t remember being in the hospital at all. Thank God.
The airport turnabout
Mom’s last day in the hospital corresponded to my last scheduled day in Florida. From the hospital Mom was to be transported to a nursing home for some additional therapy, and I was to fly home to Illinois.
Mom was doing better. Not ready to go home yet, but better. So, I thought maybe taking the flight I had scheduled would be OK. So I went to the airport, where I had one of those insights that people sometimes get when they step away from a situation. Mom had not been eating more than the tiniest amount. In fact, all I could remember her eating at the hospital was two or three spoonfuls of chocolate pudding.
So, I called Cathy, my wife and resident medical expert, and she confirmed my worst suspicions. Elderly persons sometimes just stop eating. Their system just closes down.
Had I left then, and Mom had died, I would never have forgiven myself. On the other hand, if I stayed, I might aid her recovery. Or, if not that, I might ease her passing. (As it happened, I was to do both.)
From the airport, I called the hospital to see if Mom had left yet. She had not but she was expected to leave soon.
I went directly to the nursing home, where I arrived before Mom and waited for her in the atrium. I first saw her when the ambulance attendants wheeled her in on a gurney. When she first saw me, I received my reward: the first of those smiles I described in an earlier post.
Food
The ambulance attendants set Mom up in a wheelchair. We talked for a while, and then I pulled out a brownie that I had purchased at the airport. I asked, “Do you like brownies?” she said, “Yes.” But she did not take the brownie.
So, I pinched off a little and moved it toward her mouth. She opened her mouth, and I placed it on her tongue. She ate. I fed her half a brownie this way.
The next day I brought in cherry pie. I spoon fed Mom a piece and she ate two small tubs of ice cream. The day after that she ate nearly two pieces of cherry pie on her own and a protein drink I had brought in. She didn’t care for nursing home food and it was difficult to get her started eating it. But by the fourth or fifth day she let me spoon-feed her some of that as well.
Eventually, Mom started eating enough nursing home food on her own. Not a lot, but enough. And I kept bringing her more enjoyable food: cookies, banana nut bread, protein drinks.
A Vesuvius of poop
One day around this time, Mom complained of constipation. I asked an aide to get Mom a laxative. She did. The next day Mom had a healthy appetite. So, I assumed the laxative had done its duty. On the following day, I found out otherwise. According to one of the nurse’s aides, Mom had made quite a mess of her bed that night. Shortly after I arrived, Mom needed a trip to the restroom. When the aide came out, she said Mom had stopped up the toilet. She went on to say, “I’m a girl. I don’t have to clean up a mess like that. I’m getting one of the guys to do it.” I didn’t inspect the restroom, so I can’t report on the particulars.
Unlike the aide, however, I found these proceedings delightful. They meant that Mom’s system had roared back to life.
Communication
Communicating with Mom had its challenges. She had lost one of her hearing aids, and the other was, in my judgement, worthless. This left shouting and writing as the two most obvious methods. I used both.
In addition, I put my AirPods in her ears and then on my iPhone turned “live listen” on. When I turned the volume up all the way, Mom could hear as I spoke into my cellphone. Mom called my AirPods “hearing aids,” and I suppose they were.
What we didn’t talk about
What we discussed was limited by Mom’s dementia. While her short-term memory seemed adequate for most purposes, her long-term memory had huge gaps in it, much to my disappointment. She didn’t remember living in Taylorville. She didn’t remember that we had lived at two addresses in Herrin. She didn’t remember that Tom and I were born on the same day, or my first step, or Carla’s first step. So many things I wish I could have talked over with her were simply wiped clean.
What we did talk about
We talked about whatever came up, of course. This included Glen, and the next-door neighbor, Josephine, Mom’s condition, and her relatives. Mom thought that Josephine was after Glen, though I never saw any evidence of it.
While it didn’t seem to bother Mom that she couldn’t remember vast stretches of her life, she really wanted to know her relatives. She had no trouble with her parents or sisters, but she needed a little help with nieces and nephews. I showed her many of your pictures on my cellphone, and together we made a list of your names.
Other stuff we did
With my AirPods in her ears, Mom could hear more than just me talking. I helped her listen to some of her favorite music from through the years: Dean Martin, George Jones, Tennessee Ernie Ford and more.
I read some of her favorite poems to her. She requested “The House with Nobody in It” and “The Last Leaf.” There were others.
I had recorded a couple my keyboard pieces. I played those for her.
I drew a couple pictures for her.
We sang “The Good Ship Lollipop” together.
Motivation
On my visits to the nursing home, I felt it was important to keep Mom motivated. Physical therapy was, I believed, critical for any life she might have going forward.
So, I often brought up the many things we would do once I moved her back to Illinois: dinner with family and friends, reunions, outings to Washington Park, the lake, the Lincoln Museum. She liked all these ideas.
I told her that Grace (her sister) was about to turn 101. We couldn’t let her win.
There was only one suggestion Mom added to my list, and she brought it up every time the subject came around. Top of her list was a visit to Iles Park. In case you don’t remember, Iles is a small, very ordinary park with playground equipment.
When I asked her, “Why Iles?” she said, “It’s where I used to meet my boyfriends.”
Kegel exercise
Kegel exercises are used to strengthen bladder and bowel control. For bowel movement control, the Mayo Clinic website recommends imagining that you are sitting on a marble. Now clench.
I explained all this to Mom, and, later, when I asked, she said she was practicing her Kegel’s. To remind her, I would lift my right hand just above eye-level and clench my fist like I was milking a cow. She would grimace, shake her head, and turn away.
A gentle touch
Mom said that she sometimes lost feeling in her right hand. So, I would hold it between my hands and rub back and forth. Then I would massage the palm and back and fingers. “Do the tips,” she would say. She liked the tips of her fingers massaged. Later, she wanted a gentle massage of her forearm as well.
Then one day, I stroked her head as if to put her hair in place. She liked that better than a hand massage.
Mom and Glen
Before Mom, Glen and I contracted Covid, Glen would sometimes come to the nursing home when I was there. Nursing Home staff commented on how “cute” they were. So old and so in love.
When we weren’t all there together, Glen would often ask me how Mom was doing. “Tell her I love her,” he would say. And likewise, from Mom.
Once, when Mom and I were chatting, she leaned in and spoke with and hushed tone as if imparting some state secret. “Everybody thinks Glen and I are lovers, but, really, we are just good friends,” she said. I smiled and nodded.
After Glen moved back to Illinois, I arranged a couple of phone calls between them. Using my AirPods, Mom could just make out what he was saying. I sent Myra (Glen’s sister-in-law) a video of Mom walking to show Glen. Mom requested some pictures of Glen. Myra texted three.
A couple days later, I asked Mom if she would like another phone call with Glen. “I don’t know who that is,” she said.
“Glen,” I insisted, “the man you have been living with for the past twenty-five years.”
“I don’t know him,” she repeated.
I showed her the pictures Myra sent. Mom shrugged and shook her head. So, there were no more phone calls.
To this day, I don’t understand. Did she really forget Glen that fast?
Mom, Josephine, and me
Once, when Mom’s neighbor, Josephine, was over, she and Mom got into a squabble. Why they squabbled does not matter. What does matter is that Josephine tried to bring me into it.
Looking at Mom and pointing a finger at me, Josephine said, “Your son…”
Mom interrupted, “That’s not my son.”
Josephine tried again, only louder, “Your son...”
Mom insisted, “That’s not my son!”
“Then who am I, Mom?” I said.
“A friend,” she said.
I collected my things and left. (It was time to go anyway.)
Was Mom just trying to win an argument? Was she trying to break Josephine’s pace? Or did she truly not know who I was?
Over the next couple of visits, we revisited this topic a few times. Mom convinced me that she really didn’t know I was her son. I convinced her that I really was.
Prayer
On one occasion, I pushed Mom in her wheelchair to a garden area behind the nursing home. There were a few other residents there, but not too close.
“I feel sorry for all these people,” Mom said. “I feel sorry for myself.”
A little later, she added, “I pray all the time, mostly for myself.” And later than that, she added, “I don’t know why. It never does any good.”
I said, “You made it to 93, didn’t you?”
On my next visit, Mom said, “It might seem odd that an atheist would pray so much.”
Covid
Along came Covid: first Glen, then me, then Mom. So, for the ten days of my isolation, I couldn’t visit Mom. There was plenty to do, though, most of which doesn’t really fit into this narrative.
Here are a couple things that do have to do with Mom. Early in my isolation I asked one of the nurse’s aides to tell Mom why Glen and I stopped coming. I knew this aide and I believe the message got through. I tried calling Mom a couple times, but she didn’t pick up, probably because she didn’t hear the phone. I called the nurses station and asked one of the nurses to hand Mom the phone. After waiting 20 minutes, I hung up.
Other than these attempts at talking with Mom, there was an incident in which I didn’t feel Mom was being properly medicated for Covid. That incident was adequately explained in posts at the time.
On my first couple visits to the nursing home following my isolation I was required to wear a mask, gown, and gloves. I only sort-of complied.
Mom’s happiest day
You all witnessed Mom on her happiest day at the nursing home. Her isolation had just ended, and I recorded her walking down the hall.
She later told me that she thought she would never walk again. I told her that she and me and the walker were going places. She said she didn’t plan on taking the walker.
She glowed the rest of the day, and she enjoyed all the kind words various of you posted.
I am including a second video of mom walking on that day. The production quality is not as good as the first, but you might enjoy it,
anyway.
The decline
From the day of the hallway walk, things started going downhill. Mom complained of a pain in her back and then in her right shoulder. Because of this she missed some of her physical therapy sessions. The two she did attend were a disappointment to her.
The last time I visited Mom in the nursing home showed further decline. Mom was somewhat confused and disoriented. When the aide came in to check Mom’s vitals, I asked what her oxygen level was. She said seventy-something (I don’t remember the exact number.) Then she said, “That can’t be right.” When she took it again, she said it was 100.
I challenged that number, but she pointed out that Mom’s oxygen had been turned up from 2 to 3 liters a minute.
Mom’s last meal
On my next to the last visit, Mom requested that I bring in more cherry pie. The next day, I did.
That day, she only played with nursing home food while I was there. She may have eaten something after I left, but I doubt it.
I believe Mom’s last meal was a slice of cherry pie and a small tub of ice cream washed down with a protean drink.
When doctors call…
The next day I was out on my way to get something to eat when the nursing home called. Mom was on her way to the emergency room. She was “unresponsive.” Her oxygen level was low, her blood pressure was low, and her heart was racing.
While I was preparing to go to the hospital, an emergency room doctor called. He also explained Mom’s condition, calling it “serious.” He asked how far away I was.
I went to the hospital.
The first doctor
When I arrived at Mom’s emergency room, Mom was unconscious. Her oxygen level was still critically low even though she was on 15 liters a minute (Two to three liters is a normal dosage.)
Shortly after my arrival, a doctor approached me and explained her situation. He said that the hospital would do what it could but that there was little hope. He wanted me to authorize Mom’s transfer to hospice. I told him I needed time to think about it.
The doctor also mentioned that there was one treatment he did not recommend. Sometimes the hospital places a mask over a patient’s nose and mouth. Oxygen is then blown into the mask forcing it into the lungs. When patients are unconscious, though, they tend to open their mouths and oxygen is forced into their stomachs. Then the patient aspirates and asphyxiates.
I asked what had caused Mom’s respiratory collapse. The doctor said “sepsis.”
The doctor left at this and then returned 45 minutes to an hour later.
I said ok to the hospice.
I knew then as I know now, I made the right decision. I was acting as a faithful agent of Mom’s living will in which there is no ambiguity. It was the right thing, and yet it felt very wrong.
The respiratory therapist
In addition to the 15 liters a minute of oxygen, Mom was given an antibacterial agent intravenously. Nurses also added medicine to the oxygen Mom was breathing by placing a mask over her mouth and nose and slowly releasing a mist into the mask.
A little while later, a respiratory therapist came into the room. He wheeled in a special device which he proceeded to attach to the board behind Mom’s bed with multiple hoses. Mom was now on 40 or 50 liters of oxygen. (I don’t remember which.)
The moment of clarity
After a while, Mom came to. Mom’s oxygen level never reached an acceptable level and I often saw evidence that she was delirious. But at one point she seemed to have some grasp of her situation. She looked at me and said, “I’m scared.”
I brushed her hair with my hand, smiled and said, “Oh Mom, what do you have to be afraid of.”
My emotions came to a head at this point. Knowing that minutes earlier I had consented to her death, I felt like a fraud and a liar. But what was I supposed to say?
It is worth pausing the narrative here to point out that, by the grace of God, at no time did I let the emotions boiling inside me spill out in front of Mom. My goal was to comfort her to the extent I could, not to add to her fear. I made sure she never saw the grief, the doubt, the sense of guilt and failure. She never saw a tear, although there were plenty to be seen.
The second doctor
A second emergency room doctor came in to make sure I understood the situation. His assessment was the same as the first.
The hospice administrator
Later a hospice administrator came. She wanted to know which of the two hospices in town I preferred. One was affiliated with the hospital, so I picked that one.
Later the administrator came back to say there were no beds available at that facility. However, under these circumstances, the hospital provides the same service in one of its beds. I said, ok.
The hospital / hospice room
When transportation came to move Mom to her hospital / hospice room, I left the hospital, returned to Mom’s house, and took my evening medicine.
When I returned, I found that the respiratory therapist had adjusted her treatment. He had taken away the mask which put medicine in the air Mom breathed. In its place, Mom had a mask which forced air into her lungs, described in an earlier post. She was still on 40 or 50 liters of oxygen a minute.
Mom was conscious but not communicative. I stayed with her for a while, stroking her head and smiling as lovingly as I know how, but it was getting late, and I needed some sleep.
The first night
In Mom’s hospital room there was a couch that converted into a bed. The nurse brought in a pillow, sheet, and blanket.
I couldn’t get any sleep, though, because Mom hated the forced air mask. She kept pushing it off, and then her oxygen would drop even lower, and she would become more delirious. Every few minutes she shouted out something like, “Somebody help me with my shoes. I’m ready to go home now.”
Of course, I tried to persuade Mom to leave the mask alone, but with no success. The nurse, too, tried without success. Eventually, the nurse decided to put a “glove” on Mom’s hand. The thing looked more like a fat mitten made out of gauze. While the “glove” stopped Mom from grabbing the mask, it didn’t stop her from pushing it aside.
A little later, I decided to go to Mom’s house where I might get a little sleep. With the treatment she was under, I thought she would be ok until I got back, and she was.
One last try and the third doctor
I slept for about two hours at Mom’s house. This small amount of sleep seemed to be all I needed. I cleaned up, put on a change of clothes, and returned to the hospital.
When I arrived, I decided to make one last attempt to bring Mom’s oxygen level up to where it should be. I had given up on coaxing, urging, and chiding. Instead, I positioned myself next to Mom’s bed and when she pushed the forced air mask aside, I put it back on. I’m not sure how long this went on. Everything that day seemed to last for hours, but I think I sat there for at least an hour or so. And her oxygen level did come up, but not enough. And she hated that mask.
I began to wonder why we were torturing her.
Then, Dr Brown entered the room. He hardly glanced at Mom. He had come for me. “This isn’t doing any good,” he said. He asked me to sign a form giving him permission to take Mom off life support.
I signed.
End of consciousness
When Dr Brown left, I noticed that Mom was still wearing the hated mask. So, I continued to sit with her, but the next time she pushed the mask aside, I left it alone.
A little while later a nurse came in and provided Mom with an intravenous dose of morphine and Ativan. The nurse came back on a regular basis after that, and I never saw a trace of fear, anxiety, or pain in Mom from that time forward.
After maybe half an hour, three people entered the room to adjust Mom’s treatment. I excused myself to use the restroom, and when I came out, they were gone. Mom was back on three liters of oxygen a minute. I came over to her bed and removed the “glove.”
Not much later, Mom tried to speak, but her words were gibberish. She sounded like she had lost the use of her consonants. Since I couldn’t understand her, I smiled, caressed her head, and nodded in an effort to bring comfort. When she finished, she looked troubled and turned away.
She tried to speak again several times, but with decreasing frequency as time passed. Eventually, she stopped.
Then, for a time she lay in her bed motionless and silent, but with her eyes open. When I leaned over the bed to look at her and smile, she returned my gaze. It’s strange that I had never noticed what a lovely color her eyes were before then, a soft blue gray.
Then she closed her eyes—almost. Her right eye remained open a crack. But when I leaned over to look at her, the eye did not move.
When a nurse came in, I pointed to that eye. The nurse closed it with her finger. But Moments later it came open again. And so it stayed open, but only a crack.
Of all the things that happened while I was in Florida, the time from when Dr Brown left the room until when Mom closed her eyes is by far the most difficult for me to bear. First, I signed Mom’s death warrant, then, immediately, I turned about to provide what comfort I could as she died. I’m simply not capable of such an emotional pivot. It left me with a deep and abiding sense of hypocrisy—alongside the storm of emotion already raging through me.
Mom’s last words
I don’t know why Mom was unable to articulate her words, but about half an hour after she was taken off life support, somehow, she said something with perfect clarity, consonants intact. These, then, are Mom’s last intelligible words:
“What time is it?” she said.
“12:26,” I said.
She mouthed the word, “Oh,” nodded, and turned away.
But these words aren’t the last Mom attempted to say.If the gibberish was ranting the way she always did when she was delirious, then her meaning would probably be something like, “Get me out of here. I want to go home.”
However, her manner did not resemble that of the many delirious rants I had seen. When she was delirious and calling out, she looked at the ceiling, or the walls, or out into space, never at someone, as was the case here. Her rants were always one or two sentences long and often repeated numerous times. This time she seemed to speak in paragraphs. And there was always a pleading quality to her rants. Instead of pleading, now she looked as if she was seriously and intently trying to communicate something to me, and she seemed disappointed that she couldn’t speak plainly.
I never told her she was dying, but I think it is possible that she read the signs. After all, I had forced her to keep the hated mask on, which brought her oxygen level up, possibly clearing up her mind a bit. And, of course, she had seen Dr Brown come in and talk with me. Maybe she saw me sign Dr Brown’s form. She must have noticed that I stopped putting her mask back on. She saw the morphine and Ativan treatment. She saw the three attendants disconnect her respiratory equipment. And then I took off her glove. Mom had been a nurse before she retired and could probably read the signs.
The idea that Mom was cognizant of her situation and seriously trying to tell me something fits her demeanor so well, that is what I believe.
And so, I believe Mom was trying to say something like, “It’s okay. Don’t blame yourself. Thank you for how hard you tried. I love you.” What else do people say in such situations?
While I can never know for sure, I believe these, or something very like them, are Mom’s last words.
Cathy and Andrew
Cathy and Andrew (my stepson) arrived at the hospital two or three hours after Mom closed her eyes. After the long overdue hugs and kisses, I took Andrew down to the cafeteria to get something to eat. I had only had a couple snacks over the previous 48 hours or so, and I was hungry.
When we returned, we brought up a hamburger for Cathy. While she was eating, she volunteered to spend the night with Mom. She said she thought I needed the sleep, and I didn’t see much chance of Mom regaining consciousness. And since I had no desire to watch my mother die, I collected Andrew, and we headed out for Mom’s house.
Mom died
At about 6:30 the next morning Cathy woke me with a phone call. Mom had just died. Andrew and I dressed and went to the hospital.
Mom was laying on her back with her head on her pillow, just as I had left her the night before, but her mouth had fallen open. Seeing her like that, with her mouth wide open, really bothered me.I only glanced at her a couple times.
Cathy gave me the details of Mom’s death. Cathy had been up for a while when a nurse came in to administer a dose of medicine. Cathy joined the nurse at Mom’s bedside and commented on how shallow Mom’s breathing was. Just then Mom stopped breathing. The nurse checked her pulse, and Mom was gone.
The nurse worried that the medicine she had just given had pushed Mom over the edge. Maybe.
But it doesn’t matter.
Death in America
Death in America has become too sanitized, too preprogrammed, too routine. We’ve become too good at death.
An emergency room doctor makes a prognosis, the next-of-kin is called, the patient is transferred to hospice, life support is removed, the patient is allowed a little time to die, a crematorium is called, and a week later a person’s mortal remains have been reduced to five pounds in a box—or an urn for a little extra. What I hate most about all of this is that for a couple days I was employed by this factory of death, and I did my job just as efficiently as everyone else. Together, we pushed Mom down the line and right out the door. Doesn’t it make you just want to scream?
Shouldn’t the heavens crack open and the earth weep? A living human being has just perished.
Cause of death
The emergency room doctor said that Mom’s respiratory system had collapsed due to “sepsis.” I can’t say I understand this. But then, I don’t understand why a UTI would trigger the shutdown of Mom’s digestive system either.
The death certificate doesn’t offer much help. The attending physician didn’t trouble himself too much formulating his diagnosis. Here is what it says:
To this could be added a slow growing cancer and an aneurism which could have burst at any time.
About a year ago Mom told me that two of her teeth had fallen out. There had been no accident, no caramel, no precipitating event. They just fell out. While not fatal, this points to her overall decline.
So, what was the cause of death? I don’t think you’ll find a better explanation than this: she just got too old to keep on going. She had spent all the vitality life had afforded her, and she didn’t have enough left to buy a little more time in Illinois.
One last look at a beautiful person
I’d like to close my discussion of Mom with three pictures. The first is my favorite. It used to hang on grandma’s dining room wall. Mom looks so young and happy, still in the first chapter of her life with all of life’s challenges and rewards ahead of her. I like to think that she had Iles Park on her mind when the photo was taken.
The second photo is, I believe, the last picture taken of Mom. Connie Grenon took the picture on a visit to the nursing home, and it was posted once before. What strikes me about it is that Mom didn’t bother to smile. To me she looks old and tired, especially around the eyes.
There was a lot of life between these two pictures.
For the third photo, I have selected one of a butterfly taken by the realtor selling Mom’s house. She had little idea of the love Mom had for butterflies. She took a picture of this bold little creature because it refused to budge as she approached Mom’s front door.
Those of us who believe in an afterlife may draw some additional meaning from this picture.
Afterword
It’s now been a few weeks since Mom’s passing, and, for the most part, my life has returned to its old familiar patterns. When I look back on my time in Florida, it hardly seems possible to have lasted just six weeks. It feels like six months. I still mourn for Mom each day, but the pain of her final days is gradually ebbing away. Writing a journal of that time has helped. It’s therapeutic. And at times sharing my experiences has felt a bit Ike group therapy. And that’s okay, too.
I do appreciate the many kindnesses shown to me while I was in Florida. My thanks to one and all.
I’d like to close my narrative of Mom’s final month with this thought: Life is fleeting, time is precious, and death is always sudden. Live accordingly.
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