Mum's Health Updates
MUM: March 2023
MARCH 9, HOME
Dr Hart was pissed beyond measure when we saw her today. Once again, they released Mum from the ER while failing to address her pulmonary effusion. We didn't even know that she had one. WTF, Trinity? Hoping to kill another parent??? Hart insisted that the effusion be addressed. We go in tomorrow for it.
To clarify, they diagnosed mum as having fluid between the R lung and chest wall -
again! This buildup puts pressure on the lung. That's why it can't
expand, and why it can lead to a pneumothorax. So they sent her home
from the ER with this fluid in place and without telling us how bad it was. And what is causing that fluid to form? "Dunno."
MARCH 10, IN HOSPITAL
The procedure to relieve the pressure worked, but her breathing became worse towards the end, and she had pain radiating from her chest to her jaw. It's suspected that she has a "mucus plug". They will admit Mum tonight and then assess/remove it tomorrow. We don't know the percentage of impacted mucus or where. Atelectasis?
These plugs were there a while. All complaints about her inability to catch her breath are validated! They discharged her twice with these plugs in there.
They are finally addressing her massively swollen legs, ankles, and feet. She now had compression stockings. Took them long enough!
Mum is praying that she get sleep tonight. She can't despite exhaustion.
तनाव! Feszültség! Fatica!
MARCH 11, IN HOSPITAL
I took the day off to get things done at home. Naturally, there are no answers other than being scheduled for surgical removal of the plug on Sunday. She refused to have another blood gas. I don't blame her. She's uncomfortable and unhappy. I'm hoping this surgery will give her some pep back.
MARCH 12, IN HOSPITAL
I've had about 2 hours of sleep. She was sleeping when I arrived this morning. Her facial expression was contorted. She woke and said her back hurt, an that they removed the compression stockings.
0800-ish Her surgeon stopped in because she wasn't downstairs yet. No transport folks on Sundays. The surgical team came down not long after, and I kissed her and offered up a prayer while they loaded all her gear onto the bed and wheeled her away.
Sometime o'clock. The surgery went well. Two mucus plugs removed but what caused them is heartbreaking.
She has a new tumor growing at the top of the right lung. That tumor, on the right main branch of the lungs, was heavily blocked. The plugs will return, in time. The prognosis is poor.
Jeff had to pick me up because I was too mentally and emotionally shattered to drive. The lack of sleep slapped me down hard.
MARCH 13, IN HOSPITAL
Soon to be released?! Her lungs were more congested. She has bad swelling in her legs still.
They have diagnosed mum as having fluid between the R lung and chest wall - again! This buildup puts pressure on the lung. That's why it can't expand, and why it can lead to a pneumothorax.
They'll work on changing meds. I advised them to keep her specialists in the loop, especially her cardiologist and oncologist, as well as her GP.
13:45 They want to place a drain to remove the fluid build-up.
MARCH 14, IN HOSPITAL
11:18 Per nurses' station/Nurse: Mum had a CAT scan this morning. The nursing team is waiting on results.
13:50 CAT scan results back. R lung has an endobronchial blockage, likely a mucoid impaction ("plug"), at top of branch. It is obstructive. A 5mm nodule is also present in R lung.
Mum needs a drain to prevent lung collapse post op.
It pisses me off to know that this issue is more than fluid impacting outside of lungs. She was in the ER twice. A rude nurse told her that it was "all in her head". She stated repeatedly, "I can't breathe" while in that ER and while previously admitted to remove that fluid.
All this time, they did nothing to explore any further. They put her lung at risk. They put her heart at risk. They put her life at risk. Once again, neglect is quickly leading to the loss of my parent. I went out to the car and screamed into the back seat dog pillow. I emerged feeling a bit better but with dog hair all over my face.
19:29 Been sitting at the hospital a while. Mum was groggy from her procedure when I arrived. She feels like shit. The drain is on front so she doesn't have to worry about something hurting on her back.
Meh. I'm outside smoking a cigarette. I need to quit. Chantix is off the market. So I'm sitting outside with the truck door slightly open, and I'm staring at our Bronco still parked in the lot. I can't keep track of all this shit. It just pours in and I'm probably confused about procedure times. Rinse, repeat.
My biggest accomplishment for the day? I was able to pry the dead hearing aid from Mum's grasp. Jesus, woman! I gave her the charged one. Hey, suddenly she could hear again! Alert the Vatican! I jest. I cleaned up the wax on the spent one and set it to charge. Just like the last time she was hospitalized, I'll do this swapping dance for a while.
20:18 Jeff wrapped me in a hug when I got home. He is my rock, always. I'm blessed to have a man like him. March is hard on him. His mother and father both had March birthdays. He has a March birthday.
MARCH 15, IN HOSPITAL
11:14 Mum called. She's lacking energy and feels like shit, but she's coherent! They keep stopping in to ask how she's feeling, how they are doing. I wouldn't have believed the latter if not for how this hospital operates.
Neither of us think she's coming home today. I need to start prepping the downstairs for when that day arrives. They'll send vacuum bottles for the drain.
18:39 I thought I found the good cookies in the cafeteria so I bought three. Nope. Not the one. Mum didn't seem to mind. She chowed down and enjoyed the bottled tea.
They were updating her stats when I arrived. BP, pulse, and O2 levels all look good. An hour later, and she's having some pain. She's groggy from her meds.
Honestly, what scares me the most is that "look", the way sunken eyes tip towards heaven, and incoherent thoughts distort all they pull from reality.
"I alerted the angels," my mother sighed.
I asked her how many. She told me hundreds. They come when she "pushes the button". She means the nurse call button.
MARCH 16, IN HOSPITAL
Things are the same, though Mum is getting worse. I'm too exhausted to do an entry. Exhausted, depressed, and wanting answers. Dr R called me while I was in the room.
Mom's prognosis is poor. She's entering the end stage of life. Stage IV. I need to call her friends and update them.
MARCH 17, IN HOSPITAL
This day has been fucking hell. Contradictory information. Mum's sharp mental decline. She fights me and the nursing team for wanting her to go to a care facility until we can get the downstairs set up. Can't do that on a weekend. In truth I didn't want her to go to one but...
Dr R, her oncologist, called me on the room phone. He wants her on the 7th floor at the Laurels. He was angry that they hadn't communicated with him. He was saddened by Mum's state. His voice conveyed a love for his patient. He wanted her to be somewhere safe and compassionate.
I explained this to Mum. I explained that it was a good facility, that it wasn't where my cousin and aunt were sent, that it wasn't Trinity East - their negligence killed my father. She still refuses. And she surprised me by standing firm that she was a full code rather than a DNR (Do Not Resuscitate).
MARCH 18, IN HOSPITAL
Today was hard. She isn't coherent enough to carry any conversation. She was sitting at the edge of the bed when I arrived. She isn't supposed to do that. I freaked, checked her drain, and told her that she has to call the nurse before moving like that. She balked.
She wanted to get back in bed. Okay. But no, the bed needs to be raised. Then lowered. Then raised. Then she wanted to sit on the edge again. And then back. This woman has secret energy to put towards this reposition dance. It's delightfully silly.
I think what hurt the most is her telling me to leave. I annoy her, she said. I was simply asking if she wanted me to do little things, like take the cap off her water bottle. Of course, if I didn't, she would get mad and say I wasn't helping. I won't harbor a grudge. She did this shit to me long before now. It's a familiar bonding routine. And, in the end, her brows furrow and she says, "Don't leave me".
The hospital doctor stopped in to give me an update. Once again, Mum protested going into any hospice facility. The doctor, vexed by all this, asked me to join him in the hall. I knew where this dark conversation was going before I even left the room.
We share similar concerns. As a full code, meaning they work hard to keep her alive, her quality of life will be horrid. Stuck on a ventilator, with drains, and cardiac monitoring 24/7... this is futility. It prolongs the inevitable. Our main goal is to keep her comfortable. But how much intervention until she passes? Remove the drain and she drowns. It could be hell for her. As it is, she's already on 6ml of O₂ (very high).
It's a lot of pressure on me, as both her daughter and her MPOA. I can't be there minute by minute. She could take a turn for the worse and I'm not there to assess, to override her wants if life-saving efforts leave her in a worse situation.
This is why we need human euthanasia in the US. Terminally ill patients can opt out as they hurdle towards that end stage. It's a peaceful death. The family is gathered in the room. The send the patient off with love and tears. No more pain. No more burden.
I'll go to bed soon, but that doesn't mean I'll get any sleep. Jeff got to spend time with his buddy, Elliot, tonight. That makes me happy.
MARCH 19, IN HOSPITAL
16:40 I rocked up to Mum's floor with a bag filled with her 2nd favorite cookie. They were out of the 1st. The nurse met me in the hall. Mum's doing good... except for sepsis.
Yeah, I'm not pleased. They discovered it this morning. She's had an xray and labs and they're looking into an antibiotic.
Looking into? Why the fuck did they not contact me this morning?!! I've not heard from them all fucking day! I'm her MPOA, for fuck's sake!!! Sepsis??!!!
So for those that don't know...
Sepsis is a life-threatening complication of an infection.
Sepsis occurs when chemicals released in the bloodstream to fight an infection trigger inflammation throughout the body. This can cause a cascade of changes that damage multiple organ systems, leading them to fail, sometimes even resulting in death.
We've hovered over options based on what would fail first, lungs or heart. To be decimated by a preventable infection is gross negligence.
Symptoms include fever, difficulty breathing, low blood pressure, fast heart rate, and mental confusion. Yes, these symptoms mirror other health conditions but, based on the need for a drain, I'd think they'd be more vigilant. They should have been proactive rather than allowing the infection to continue.
Why am I seething? This hospital neglected my father's mouth for a month, despite us telling them to look into it. The man refused to eat. Then he refused his meds, so they put them in applesauce. Then he stopped taking that, so they put in a gastric tube. Then they shipped him over to the ER. That's when they diagnosed him with an advanced thrush infection. He suffered all that time.
So now my Mum is laying in bed and looking like Death warmed over. And my agony? I voiced my concerns over her hygiene and potential infection at the port entry point. This woman hasn't had a bath since 27 February. "Don't worry. She'll be fine."
I asked her about a bath several days ago. She says they only wash "the important parts". This is what sparked my concern!
She isn't coherent. That's okay. She needs her rest.
Meanwhile, her magical vacuum gizmo continues to draw fluids out.
MARCH 20, IN HOSPITAL
02:45 Called before bed. Her nurse says she's slept the last three hours. Good. Mum kept sitting up for me earlier, and then complained that she couldn't sleep sitting up.
Her vitals look good. Her heart rate is finally low. She had an Ultram not too long ago. I reminded the nurse that she takes percocet at home; she made a note about it. Which is odd, because the nurse yesterday evening had said she made a note about it.
Mum's temperature is within normal range. They do not know where the infection started, nor can they tell me whether or not the sepsis is still putting her life in jeopardy. They do have her on an antibiotic, finally.
Jeff told me to hire a lawyer. I'm at that point. As I've said countless times, this hospital's negligence killed my father. Slowly. Painfully. Meanwhile, the work continues on the multi-million dollar addition. Fucking pay your nurses, techs, and other support personnel; require your doctors to do more than stop in a few minutes and then bill insurance companies upwards of $700 for that brief visit. In Dad's case, they billed for the three minutes the doctor spent outside his door. Dude never walked into the room.
We don't know what time Dr R will do his rounds. It's possible that he might stop in before his scheduled surgeries today. I gave Mum a fresh hearing aid so she could hear him when I stopped in. He usually does rounds after 8PM. I don't know if I should go in later this morning or wait until afternoon. Either way, I plan to kip on the floor out of Mum's sight to nap a while.
Today is also Jeff's birthday. He's 60 now.
12:30 Aunt Honey texted to let me know that Mum didn't sound too groggy over the phone. And Mum thanked everyone for their prayers. Aunt Honey said it was good to hear her voice. I agree. I called Mum shortly after and she sounded normal though she was hacking up a lung. "Let me get water and I'll call you back." No worries. She now has a pain pill on board.
14:23 Mum hasn't called back. *laughs* I'm heading down there in a few anyway.
14:40 Valley Hospice called. Abby, the social worker, alerted them about Mum's need for hospice. The problem is, we were told by her oncologist that she should be homed in The Laurels. I left a message with the social worker.
18:00 Been dozing off and on. Mum has better clarity today. She was able to feed herself on smooth motion. She retained thoughts in order to converse. I told her that Jeff's birthday is today, and she called him after she ate her dinner without any prompts from me.
She's having a bath now. I've come downstairs and just realized that Dr R was going to call. He did rounds early this morning.
MARCH 21, IN HOSPITAL
14:30 The hospice nurses arrived to go over all Mum's details. She'll be homed upstairs at Valley Hospice. No other facility will touch her with the drain in place. There are only 6 beds up there, so patients have more one-on-one rapport with the nurses and techs.
The downside is that Valley Hospice won't touch her if she had a full code in place. She didn't want to sign the DNR. They reassured us that they'll keep her comfortable when that time comes. Mum still didn't want to sign.
"Ma, do you remember when Dad died? It took everything I had not to start chest compressions on him. To bring him back. To endure more suffering. You signed his DNR so Jesus could take him home when he time came."
She signed the DNR.
Meanwhile, I'm still battling her damn bank over power of attorney. I can't sign her checks to pay her bills. In particular, her Publishers Clearing House account.
MARCH 22, IN HOSPICE
11:16 They moved Mum to hospice yesterday evening. I'll leave shortly to visit her.
11:39 Mum called. The room is very nice, and the staff are wonderful. I still need to take my meds and shower so I can visit. Plus, I bring her yogurt. Who doesn't love yogurt with snickers bits in it.
18:30 Catching up here. Mum was in good spirits when I arrived, though she was a bit groggy from her nap. She complained that she couldn't hear. Ugh. Time to cycle those hearing aids. And yeah, the one I took from her ear was totally out of juice. No wonder that she was grumpy.
The nursing team really is wonderful. Of course, I don't know if they're also the night shift. Regardless, they had Mum out of the bed and into her potty chair so gently.
Her pain flared up once she was back in bed. It was horrid and left her wincing and moaning. They were quick to bring her oxy, a nice liquid form that goes under the tongue. It took a bit to kick in.
The room has a cute board on the wall. Typical nurse name, aid name, etc. This one also included the room phone number. I was quick to fire that off to Aunt Honey, and let her know Mum was still in a bit of pain. She called right away.
I love my Aunt Honey. I always have. We used to visit on holidays, and the drive to Bakersfield was a nice one. I remember their house being smaller than ours but it was packed with goodness. My Uncle David was an artist. (The Autumn landscape he painted proudly hangs above my desk!) My cousins, Dave and John, were older than I was. They did the Teen Thing and hung out in their room. And I loved going out back to visit with their GSD, Brutus. I was warned several times not to bother him, and that he could bite me, so I always came prepared via a baggy of kibble in my pocket. He loved getting those. My best memory at our own house was Dave and John running all over our backyard embankment. They tried to catch lizards. John eventually succeeded, I think. I remember him holding one.
Aunt Honey's love is boundless. I told her about Mum being moved to hospice (yesterday) and that it was difficult to get her to understand that this is the best option. Aunt Honey's text reply make me cry. A healing kind of cry associated with goodness and warmth.
I was thinking that maybe a priest can talk to mom. Do you think that she would have trust and faith in a man of God to convey the realities to her.
I think she feels that she hasn't fulfilled her life with that God had wanted her to do. When I spoke with her last week, I left her know that a lot of people were introduced to the power of prayer by her doing. She even had a doctor pray with her. She has lived and breathed God's life, had written plays, spread the word of God, and by her example, many people's lives have been enriched. Maybe if she hears it from a priest or somebody she respects, she will realize all of her accomplishments.
She's absolutely right.
Though Mum did agree to the move upstairs, I don't think she has grasped reality. She wants to keep going. I'm fine with that effort, too. But I realize that we don't have the means to take care of her at home due to the chest vacuum. I realize that she will continue to get weaker. Currently, she seems to misunderstand or deny that she's near the end. She is so adamant that she actually has me believing that it isn't her time. I begin to question just about everything.
There are four major stages of death a dying individual experiences and those are; social, psychological, biological and physiological.*
Social death is the symbolic death of the patient in the world the patient has known. The patient’s social contacts often diminish; the patient is often isolated from community and confined to the bed, hospital, or nursing home. The world as the patient had known it is gone.
She is isolated but she also hasn't engaged in any social activities since Dad died and COVID hit. She talks to Aunt Honey and Colorado friends on the phone.
Psychological death is the death of the dying person’s personality. This is usually caused by the dying process. One time, I was talking to a daughter of a terminally ill patient suffering from the Alzheimer’s disease. The patient’s memory was gone. She couldn’t remember her family and friends. The daughter told me, “As far as I am concerned, I lost my mother six months ago. From the day she could not remember me, I knew she was dead.” The disease process often fosters personality changes biochemically. As death nears, the dying person withdraws from the world and into themselves. The dying person, as others have known that person, dies.
She knows who she is and who we are but she has moments where she withdraws into herself. However - and this is a big however - she has done this after every surgery and hospitalization! It's like she regresses, morphing into a petulant child, balking at anything that she deems to be stupid, or an inconvenience, or too difficult to do, or too painful. Her hospitalization becomes extended. She's currently vacillating between childlike and adult. I haven't seen any petulance.
The Third stage of death is biological death. This is when the organism as a human entity, no longer exists. Artificial feeding tubes or life support systems may be provided to the keep the patient alive.
We haven't reached this point. The chest drain is there to keep fluid from hurting her. As a DNR, we won't muck about with feeding tubes or life support.
The Fourth and final stage of death is physiological death. This is the cessation of all vital organs. At this point, the patient is declared officially dead.
This stage is bitterly painful for me to watch. I've held our dogs when we release them to the Rainbow Bridge. I stood beside Dad as his body grew cold. I have to stifle the urge to revive - they are already beyond my reach. And so my mother's own death... I'm terrified. And I'm trying to ready myself for the pain.
These four major stages of death normally succeed one another. The hospice psychosocial team can help facilitate for a peaceful transition from one stage of death to another. Through these stages, the patient usually needs a lot of support from family, friends and faith community and the hospice team.
Valley Hospice has gone out of their way to help with this. I'm planning a long stay tomorrow, so I'll chat with them about all this.
20:45 Called Mum to wish her a good night. She was still in good spirits though confused about the time of day. I do the same thing when hospitalized more than a few days. Dad did it, too. And after Mum's heart surgery, she called me at 4 AM every day to ask if I would bring her dinner.
MARCH 23, IN HOSPICE
18:00 [updating] Mum was getting off the potty chair when I arrived. The nurses were gentle with her, as well as patient. Mum is alert and that means a bit of fussing. She cracks me up.
Unfortunately, we had some bad news. One hearing aid went missing. They looked all over for it, and I laid down on the floor to shine a flashlight under her bed, but we couldn't find it. Mum thought maybe it was in her diaper. I've traded the hearing aids out for her every day; one in, one charging. The single one will die soon.
She grew sleepy. I curled up on the guest bed and we napped together.
The sunny spot of her day was when Dr Hart walked in. Mum's face lit up. It's the first big smile I've seen since arriving at the ER a million years ago.
They chatted a while, with Dr Hart peppering a few assessment questions in. It's hard to see a patient decline, especially one like Mum. Towards the end, Mum sat up to look at Dr Hart eye to eye.
"Thank you for taking such good care of me," Mum said. She went on to thank Dr Hart for her commitment to her patients. She continued with some powerful and encouraging praise. I was quietly crying by then.
They hugged each other, and she hugged me.
I left shortly after. The staff is excellent. I knew she would be in good hands.
MARCH 24, IN HOSPICE
19:00 [updating] Jeff visited Mum in my stead. I had a bad flareup. I climbed out of our bed, made coffee, went back upstairs and, after an hour or two, popped my pain pill and climbed into Mum's bed. I think I slept until 1400? Not sure.
The visit was hard on Jeff. It's been a couple days since he'd seen her. She's gone a bit downhill since then.
He called me shortly before leaving the hospital. I could hear pain in his voice. I asked him what was wrong... and there was a long, frightening pause.
"Oh my God, Mum died??!" I started to freak out.
No, she hadn't.
He was depressed about losing her. She can be an absolute shit to us and we'd still care about her. We'd still love her.
Okay, I have bitched and moaned about ridiculous nonsense she has put me through. That doesn't mean we don't have magical and poignant moments. In truth, I've worried about her passing ever since my dad passed.
And now I'm sitting here at 2:40 AM on Monday, not having gone to bed yet. I don't want my mom to die. No matter how much we annoy each other, she has always been there for us, for me. When Nutmeg needed surgery, she talked dad into paying for it. When we needed a car, they loaned us theirs since dad had the van from work. When we needed something fixed, they came through. When Better Half was being an asshole, she held me. When I had an audition, she worked with me on my vocals. When a roommate fucked me over, she threatened to take Rhonda's "HiFi". When I shaved my head, she didn't laugh. When all seemed lost, she would pray. I want to scream at the wind, "Don't take her!" -November 16, 2020
20:15 Hospice called to ask about the missing hearing aid. They're confused. I agree - it can be confusing. Mum went upstairs with both hearing aids, one in her ear. I handed her a charged one the next day. I put the spent one in the charger. When I visited yesterday, she was missing that hearing aid. I gave her the one in the charger so she could hear. I wish that damn charger had a top to contain contents.
MARCH 25, IN HOSPICE
18:50 I can't even begin to explain my emotions right now.
20:00 There is a cozy room just off the hall, with a beautiful fireplace and a rustic table filled with baked goods donated by patrons.
There is a look, a posture that all livings assume as the end approaches. The slack jaw; mumbling words that refuse to form into anything understandable; the eyes vacillating between reality and dreams as they look at you, or through you. Heaven isn't too far away.
I held Mum's hand and softly sung her a lullaby. I teared up. Finishing it was a struggle.
"I'm going," Mum said.
"To see Dad and Jesus?"
"Yes." A smile flitted a cross her face.
"You tell Dad I love him. And he'll tell you that I love you, too."
She nodded and began to doze again. An Aide stopped in. We figured out that she was in pain. I stepped into the hall and faced into the corner where I could sob without upsetting Mum.
Another Aide, Melanie, stopped to see if I was okay. I never, NEVER cry in front of anyone. Only Jeff has seen my tears. I found myself sobbing into the woman's shoulder. They understood my pain. That's when they showed me this warm break room.
I'm sitting here now. I'll return to Mum in just a little bit.
MARCH 26, IN HOSPICE
13:45 I slept in hospice last night. It felt like I had barely closed my eyes before a doctor loudly said, "Hello!" It was meant for Mum but I responded back to him.
The staff here can not be praised enough for the work they do. Even the doctor had kindness and respect when he spoke to Mum.
Mum's prognosis isn't good. She has declined significantly over the last 24 hours. She knows who we are and responds to some questions. However, she is spending the majority of her time resting, mouth open and eyes half lidded. Nurse Amy consulted with the doctor. We'll take her off oxy and put her on straight morphine to combat rising discomfort.
Jeff brought his laptop for me to write on. He forgot the mouse. I reach to the right and find only my phone. Oh, wait. It's touch screen Neeto.
I can't reach Mum's friends. I don't have them on my caller ID. I asked Jeff to reach out to Cindy B, Anne J, Mary Lou D, and Larry F. These are people she talks to the most. And Aunt Honey is already in the loop.
Being honest here...I'm having a hard time making phone calls. I stumble and stammer over words. That's amplified due to stress. Aunt Honey and Jeff would understand my ramblings and my propensity to insert the wrong word.
22:45 Never has a field bath felt so good. I smell like a patient. That's okay.
Mum is fast asleep. She still looks beautiful to me.
She has a light build and ultra feminine facial features.
I'm built like a brick shithouse with bubble wrap and canvas on the outside. Basically a weightlifter gone to seed. Goodbye Olympic dreams, lol.
I took a picture.
MARCH 27, IN HOSPICE
11:20 Mum has passed away.
She was the last of our sunshine... the Mininni Sisters.
* Ebema, S. (2021, January 14). Four Stages of Death Affecting the Hospice Patient. Hospice Chaplaincy. Retrieved March 22, 2023, from https://hospicechaplaincy.com/2020/11/11/four-stages-of-death-affecting-the-hospice-patient/