u/Ok-Director9147

Anyone else had a penny from Heaven experience or another sign?

I'm 100% sure I did. Earlier today I went to the cemetery to bring fresh flowers because I needed that floral arrangement out of my kitchen.

I have had 2 signs prior to this. Found a random toy car under the bed, and a dream visitation. Anyway, I told him how I hoped he wasn't angry with me for putting him on hospice and not being in the room when he passed.

Later, I got home and decided to switch purses. Now, my husband used 2 mason jars for his coins. One for pennies and one for not pennies. I'm not sure why. I had emptied both of them and cashed in to pay for gas and the dog's heart meds well over 2 months ago. So I reach for the jar in the back of the cabinet and I see a single penny. Year: 1997. The year we met, the year he told me he loved me, the year he took me to 3 major family events, the year we got engaged. 1997. I got my answer.

Anyway. If you have a penny from Heaven or another sign please share. Thinking about it will make you and others smile.

So trying to lighten the mood, vent I'm not sure. These are things that I'm over hearing 12 days in:

1. "Everything happens for a reason" - if you can't tell me the reason, shut your cakehole

2. "Be sure to take time for yourself" I'm not even certain that makes sense. Are these people confused about what makes us widows? I have nothing but time for myself.

3. "Do you have groceries"/"Did you eat" - As if the moment he passed all the food mysteriously disappeared.

4. "He would want/he wouldn't want" - What makes them think they know better than me what he would or wouldn't want"

5. Comments about how we sleep too much and that's unhealthy - Grief can be tiring, if I want to take a nap at 4:30 in the afternoon because my body says I'm tired I will. My entire world just changed and my body is trying to find the right Circadian rhythm.

6. "I know how you feel, my (insert other non-husband relative here) was about his age when he passed from cancer". I'm not saying that a widow/widower has worse grief than that individual but it isn't the same. It Is multiplied because our husbands had so many parts in our life. I didn't just lose my husband, I lost my best friend, my lover, my rock, my everything, my future, my past, the father of my children, the person that fixed everything in the house, mowed the lawn, held my hand when I was upset, reminded me to gas up the car, my dinner and movie date, my designated driver if I had too much wine, again - my everything

7. "You're young you'll find..." - Don't finish that sentence, I'm not that young and I have no interest in finding what you are going to say

8. "What are you going to do with his tools/ truck/ matchbox collection/ hats / table saw/ mower, etc.​" - well you ain't getting it just because you ask for it, vulture.

Anything else I missed?

I'm having trouble saying "I'm Jeff's Widow" or calling him "my late husband", for one he was never late to anything so it feels wrong.

Yesterday it had been 1 week. 1 week since I found him. And I really thought I was okay going through his bathroom to clean it and clear out things. I managed to get rid of a practically empty bottle of Dove Body Wash and then I picked up the Old Spice Body Wash that was still full and I couldn't do anything else. For context he would alternate Body wash and matching deodorant between the two brands but the Old Spice was my favorite.

I am taking a 2 month Family Responsibility Leave to "settle the estate" even though I don't think it will take that long. Everything is in both our names. But I really think that 2 months will be enough when I go back to work when I don't get that look anymore. You know the one, the "I feel so sorry for you" look. I'm over that look. And maybe in 2 months they won't ask so many questions about his illness, I'm over being a damn medical dictionary too.

Maybe by then when people ask me "how are you" I can stop being so brutally honest. What are people expecting me to say to that anyway? Because when I answer honestly they act almost offended, like how dare I tell them I almost slept through the night, or I didn't cry until 10 a.m. today. I cannot just say "I'm fine, how are you" Because I'm not fine and there are only like 5 people who I care how they are doing right now because I know those 5 people miss him almost as hard as I do.

I did read someone else posting about having "ambassador" coworkers to explain my boundaries on my return and love that idea. Because work at this point will be a distraction from my grief.

I also think I need that 2 months so I don't snap at clients. If I just took my normal 2 days for bereavement I would be going back today. And there is no way I feel like doing social worker stuff today or hearing other people's problems.

He passed on Sunday after being home on hospice for 2 days. He wanted to be at home and he passed in our home, in our bed. I fell asleep on the couch watching the news. Woke up at 1ish Sunday morning, almost went back to sleep but something told me to check on him. And he was gone. I knew by looking at him but refused to believe it. I tried to check his blood pressure on both arms error code, tried the O2 meter nothing, pointed the touchless thermometer at him, it beeped Low. I clapped my hands in front of his face, yelled, lay next to him and cried on his chest. It took that feeling of no rise in his sunken chest for me to call hospice. And all I could do until she arrived was apologize to him for not being there, not sensing that would be the last night I could lay close to him.​ Not being a better wife, a better caregiver.

Burial was today. BTW we live in a small town and I can see the cemetery from our deck. They dug his grave on Tuesday. This morning I watched the burial vault on it's way to the cemetery while I took the dog out.

I thought today I was okay. Read his eulogy, said goodbye to him. I thought I was okay. Then I was at the luncheon at the church afterwards, got my plate and started looking to see where he was sitting. Then I remembered why I was there and he wasn't and never will be again.

Everything feels stifling and empty at the same time. And since my adult stepdaughter is staying with me I cannot do what I want to do, I want to run to that cemetery and bawl my eyes out right now.

I don't want to comfort other people. The day he passed, I posted on Facebook that I wanted to be surrounded by family and only family. Then they left and a well meaning neighbor came over because she felt I needed a prayer and she needed to cry on my shoulder. No, I need my husband, sleep and not to have people crying on my shoulder that still have a husband. We were praying for months. She prayed for angels to look over me, the same angels that took my husband.

People ask me if I need anything. Yeah, I need my husband. My stubborn, bull-headed, funny, loving, caring, handsome, sexy husband.

Don't know what else to say. I'm a widow. Just like that. 28 years of marriage

My husband was just discharged from the hospital to hospice yesterday for squamous cell carcinoma of the hypopharanx with mets in his lung, lymph nodes, spine and left hip. Probably more places but our insurance denied prior authorization for a PET Scan. (Fuck You Aetna).

Because he now has diminished mental capacity (no explanation other than not getting enough oxygen to his brain) as his POA I had to make this decision. And it was so difficult. This is my husband and best friend of 29 years and he always said he wanted to exhaust all options snd fight to the end. But there are no more options. Any treatment would actually make him sicker and do nothing to the cancer.

It seems unreal. I still think he's going to get up out of that bed and talk to me and we'll have a real conversation. I cannot even remember the last time that happened. It was probably in June but I cannot remember when or what it was about.

They assigned us 2 visits a week from the nurse and a bath aid 1x a week. Initial assessment had him at a PSS of 30.

The hospital did try to get me referrals to a Skilled Nursing Facility but I shut that down. He always said if it came to that put a bullet in his head because he wants to die at home.

He has Medicare A and of course my employer insurance through Aetna. I called them and they offer nothing in addition to Medicare A. Nothing. So I'm seriously considering dropping Aetna, why am I paying them if they offer nothing more than Medicare? Because I exhausted my FMLA I'm on what is called Family Responsibility Leave, which is unpaid, I'm not permitted to work part time (not even the paid caregiver program) and have to pay for the health insurance that has done nothing.

I hate insurance. I hate cancer. They are both parasites. I hate our healthcare system that would rather throw somebody in a cold facility than pay for a nurse to help them die with dignity in their own bed.

Since we're just starting any advice? I gladly will take advice from people that have been there, done that.

So last week husband acted erratic, took him to the ER, admitted to hospital with altered mental state. Discharged after 2 nights was told to cut back on pain med and given a script for antibiotics. Didnt tell me why he needed antibiotics. 3 days later, at a dr appt days he cant breath and turns dark red. Dr sends him to ER. Readmitted.

Last night tried to pull out the IV line in his chemo port, nurse tried to stop him. He pushed her so they put wrist restraints on him. He was very agitated earlier today, tried to get out of bed (he can't bear weight because he has cancer in his hip bone). After that he's been completely lethargic.

I asked the Hospitalist to consult with an oncologist about his mental state because I really don't think it was addressed last time. Just, oh tested positive for opioids. That's the answer.

I showed him pictures, he recognized the dog but not our cat. Also, when they ask him the Alert and Oriented questions he gets his name right but nothing else.

I'm just so sad now because if this is terminal agitation not only do I not have much time left with him but this is what it will be? We will never have a sane actual conversation again. I feel so sad that I cannot stay in that room because it makes no difference. I can't go home because it's filled with our life together but I have to let the dog out and give her heart medications. So I'm crying in the family room. This can't be it.

But I've seen this pattern with my mom before she went in hospice and just became completely unresponsive. This pattern. Right down to the lymphedema.

How does everybody else deal with this grief and denial?

I hate cancer. I hated it when it took my favorite aunt when I was 17 (she died on my birthday). Hate that it took my mom when I was 27. Hate that on my husband's first cancer round it took away our chance to have children. Hate that on his second cancer round took his voice. And now it's going to take him. My best friend, the one person that truly knows me.

I've known this for some time but this hospitalization it's really hitting home. Probably because the word hospice is being tossed around. Case Management, Palliative Care and the hospitalist. Hospitalist even noted that his oncologist brought it up. Maybe he did, I don't remember. I remember my husband saying exhaust all options and saying whatever it takes, even intubation. As POA it's on me. And I feel so guilty because of how exhausting it is to care for him, like praying for relief has made him worse. I know logically that makeincubation.

I just don't know what to do. And he's barely coherent to talk about if he wants to stop antibody treatment and Keytruda. Even though it hasn't done shit.

So, this morning I really didn't want to get out of bed. Probably something to do with 3 bed sheet changes. Really, where does all this pee come from? Apparently from Ativan and Lexapro. Duly noted. Thank you big pharma for making a drug that combines drowsiness with more frequent urination.

Pretty much other than my caregiver stuff I phoned in life today.

My elderly dog peed on the floor in the spare bedroom and I'm like meh, everybody else pees in the house, why not.

Not sure how many times I washed a partocular load of laundry but as I was folding it I was looking for things I could throw out instead. It's semi-folded and in the basket. No sense in putting it away when it's sheets that might be switched later or clothes we'll wear tomorrow.

While loading the dishwasher, there wasn't enough room for 3 Rubbermaid containers so I threw them in the recycling. Handwashing, bo thank you.

A neighbor stopped by and I didn't even wake him up, told her we were both really tired. Since I was in my pajamas at 3 pm with dried Jevity I'm sure she believed me. Plus, wasn't feeling up to praying with her.

Which had me thinking if the goal is to get to heaven, why do people pray for a miracle to keep that from happening?

I had intended on making pasta salad but I'm eating Cheerios for dinner. My caregiver duties don't involve meal prep because he's on a PEG Tube so any meal I prep is for myself and a plate to trick the dog into taking her heart meds. Also known to create more pee.

This is my life now. I worked hard when I was young to get an education to get my MSW and I spend all night cleaning piss and shit. And then all day in a daze when my coffee wears off. I think it wears off faster because I rarely get to enjoy it hot

At least the cat pees/poops in his litter box. My cat is now the favorite. Really he doesn't ask for much, just kibble, clean water and a bit of Fancy Feast.

That is all for the night

So I put this on his CaringBridge page because I'm over all the unnecessary texts and calls. Just texts wanting to know what is going on because the rumor mill in our community is rampant every time an ambulance or home health van arrives at our house. And it's usually from just random people that he knows and always something like "how is .... doing".

One, he has a phone and if he doesn't text you back there's no need to text me 10 minutes later for an update, especially if you aren't family, the neighbors that actually help with his care or the pastor from our church. Or a damn Microsoft Teams request through my work email. So I posted this.

" hope no one is offended by this update.

Right now I have a ton of stuff on my plate and just do not have time to answer every text, phone call or IM about .... condition.

If I am not in the middle of driving, providing care to, talking to a doctor, cleaning, doing laundry or walking the dog I will answer my phone.

If I do not answer or do not text you back that same day please understand. I prioritize returning calls to family, the pastor from our church, doctors, friends that are actively involved in his care, neighbors that are helping in some way.

I do this because what spare time I do have I would like to spend with my husband while I still can.

If there are updates on his condition I will post them on the Caring Bridge Page. If there isnt a new post then that means there has not been a change.

does have his phone and will return texts and calls as he feels up to it as well."

I'm over well-meaning nosy people.

So I put this on his CaringBridge page because I'm over all the unnecessary texts and calls. Just texts wanting to know what is going on because the rumor mill in our community is rampant every time an ambulance or home health van arrives at our house. And it's usually from just random people that he knows and always something like "how is .... doing".

One, he has a phone and if he doesn't text you back there's no need to text me 10 minutes later for an update, especially if you aren't family, the neighbors that actually help with his care or the pastor from our church. Or a damn Microsoft Teams request through my work email. So I posted this.

" hope no one is offended by this update.

Right now I have a ton of stuff on my plate and just do not have time to answer every text, phone call or IM about .... condition.

If I am not in the middle of driving, providing care to, talking to a doctor, cleaning, doing laundry or walking the dog I will answer my phone.

If I do not answer or do not text you back that same day please understand. I prioritize returning calls to family, the pastor from our church, doctors, friends that are actively involved in his care, neighbors that are helping in some way.

I do this because what spare time I do have I would like to spend with my husband while I still can.

If there are updates on his condition I will post them on the Caring Bridge Page. If there isnt a new post then that means there has not been a change.

does have his phone and will return texts and calls as he feels up to it as well."

I'm over well-meaning nosy people.

Don't even know if any one is up but I have to get this out.

So husband was in the hospital until Tuesday when he discharged himself against medical advice. His liver levels were elevated but going down. Blood sugar in the middle 200s, they were giving him insulin to no avail. Also, he has cancer from the throat that spread to lungs, hip and spine. Don't know if anywhere else, CT didn't show anything and insurance denied prior authorization for a PET scan. Granted, the guy in the hospital room next door was cognitively challenged and yelled the whole time, had his door open, etc. So DH didn't get much sleep. But he said he wanted to be home, not in a hospital when he goes. Also, they talked to him about hospice care when I was not in the room, probably that set him off because he wants to exhaust all options and is not interested in hospice care.

Wednesday, went to see Radiologist about hip and spine for palliative care.​ He seemed tired out.

Yesterday, his brother came to visit, somewhat aware of what was going on.

I have been awake all night it is 4 am. He had an ambien, had an ativan, and is still beyond agitated and won't go to sleep. I had the dog sit with him, he scared her off when he started yelling at "Danny" to get out of the house. He was talking to the guy on tv so I turned off the tv. He keeps saying get these people out of the house.

I'm respectful of his wishes and since he discharged himself I don't know what they can do at the hospital since he will probably refuse to be admitted. He won't be cooperative.

I know I should take him to the ER but other than being an ass and talking about people that aren't there, there is nothing wrong. No temp, BP was normal last time I checked. Refuses to let me check his blood sugar. Eyes and skin are normal color.

How long do these episodes last? Or is this just how he is now?

After about 7 hospital admissions this year I've noticed good and bad behavior from families:

1. I used to find this annoying - an entire family making camp in the family lounge. Now I realize that is rare and wonderful. But the point is, they show up and they stay. Maybe not everyone at once, but there is always someone there so at least the primary caregiver can get a break. No excuses. No lame ass reasons or phoning it in. They show up. Not just for 5 minutes but for all of visiting hours and beyond.

2. Bad - keeping up appearances. Showing up to visit their mother for 15 minutes on Mother's Day and act like that woman with dementia hasn't been in that hospital all week alone. But they showed up to help her eat peaches.

3. Smoking in the bathroom - seriously?

4. Ambushing the nurse when they are getting ready to go in another patients room or have already stepped in. Actually happened to us and it wasn't an emergency. So my husband's BP was elevated and the nurse was bringing him a beta blocker and this lady from across the hall just had to tell her that her LO "wants something to eat!"

5. Double parking.

6. Parking in the unloading/loading area in front of the hospital to let someone that isn't the patient get out.

Any other good/bad family behavior?

One day this will end. One day it will be the worst day of my life and every bad is One step closer. Yesterday was not that day. I started a habit of gratitude I guess acknowledging at midnight that my LO made it another day.

But it is tiring. The performance of being the supportive wife, POA, the one that has to greet well wishers in the hospital and relay everything when the doctors can't seem to tell me anything. And my exhausted ass has to be the cheerleader when visitors come to the hospital. And resist the urge when the preachers wife asks "and how are you with all this", want to yell "not worth a fuck."

I know everyone means well but why can't I just sleep or cry in this vinyl sleeper chair? Why do I have to entertain people.

Rough day started at 3 am with a good dose of incontinence. Then trying to navigate him to the commode so I could change the pee pad he falls. Doesnt trip, stagger, just legs gave out on him and crumpled.

Background info, stage 4 cancer with mets in the spine. So incontinence and a fall I'm thinking spinal compression. Refuses to let me call an ambulance and have it checked out. I asked if he wants pain med with his morning medicines. So I prep the morning meds to go through the PEG Tube with Tylenol. Come back and the bed and his sleeping shorts are wet again.

tells me he spilled water and it wasn't piss. Funny thing his ice chip cup is full and by the bed and there's a full bottle of water by the bed. Plus, the shorts smell like piss. Ask again about getting checked out. He says no and says something really weird. So I check temp, BP, O2. Nothing other than BP and pulse is slightly elevated. I go to find the glucose monitor to check blood sugar and didn't get that accomplished because when I stuck him you would think I tried to cut his finger off.

Finally convince him to get checked out. Call an ambulance. He tells them at the ER before I get there he tripped on a rug and his hip and shoulder hurt. Luckily nothing broken but they didn't check his spine because he didn't mention his mets at T8 and T12.

Only there a couple hours, head CT, x-ray of hip. Nothing broken, they are going to send him home. I asked about the way he fell just crumpled and tell them about the spine. Dr asks if he wants that checked out. He says no, just want to go home. So I look like an asshole.

And I feel like one, because I wanted them to keep him.

I wanted this hellish day to be the end of this caregiver crap.

I wanted him to have a hip fracture so he would have to be put in a rehab facility

I want to never clean up piss again

I want people to stop praying for Jesus to give me strength. I don't want strength, I want this to be over.

I want people to stop telling him to be strong and keep fighting. Even though the treatment didn't work, the cancer is spreading. But keep praying and fighting.

I want spamblocker to work on his phone because every time it rings he wakes up.

I want our old life back where I go to work, the bills are paid and date night was a thing. Where I could take a promotion without having to worry about doctors appts, Keytruda, piss.

Even worse, I got a notice for jury duty and thought that would be better than this and then his siblings and other family would have to step in. But they all know I could get an exemption so they wouldn't. I would rather serve on a jury than watch someone slowly die.

And it is slow because he wants to keep going through treatments that make him sick, piss himself, and don't work. Because he has to try, because he has to fight. This is no life. This is purgatory, halfway between the life we once had and the certain future.

There are no miracles. It's just waiting for him to die. And every day it gets worse and worse. Every day I load up that feeding pump and he continues to lose weight. Every day I give him his meds. For what? For his thyroid, cholesterol, and heart murmur? He's dying and these pills won't stop that

​

So this is sort of related. So I'm a caregiver for my husband that is Stage 4 Cancer. I took intermittent FMLA that eventually turned into continuous due to worsening symptoms, multiple hospitalizations and my boss changing around the remote work rotation.

In May I turned in my paperwork to take continuous time off for June because my husband started round 2 and 3 of chemo. Which only made him sicker, had minimal effect on the mets in his lung and 3 new mets popped up 1 large one in his hip and 2 in the spine.

So during hospitalization 2 for the month of June I checked my email from work because I have applied for several fully remote positions in other offices. Received an email on the 16th that I didn't turn in an absence request for the 15th and payroll wanted to know what time I was going to use. I Inquired about my FMLA balance to know if I could use FMLA ir burn my 1 remaining vacation day. 1 week later on the 23rd I was told I exhausted my FMLA time on the 5th. So I contacted our FMLA coordinator and reviewed the union contract.

Yesterday at the doctors office hearing grim news. Chemo didn't work and only caused him to be hospitalized with each round. he still wants to proceed with Keytruda, an antibody therapy and palliative radiation on the hip just to ease the pain because LO wants to exhaust all options.

During this appt my main boss called. I declined the call obviously. The last person I want to talk to after finding out I may only have 6 months left with my husband of 28 years is my stupid boss. My direct manager texts me today saying to call her back because my job is on the line. Like Seriously?

We are union and there is an option in the contract under Family Responsibility Leave it talks about instead of completely unpaid leave there is an option for a part time work schedule as long as it doesn't interfere with the operations of the office. 3-4 hours a day where I don't have to clean up piss, shit, vomit etc and be somewhat normal is practically respite and would pay my insurance, mortgage, utilities.

Not only did main boss turn me down flat for part time but also stated all of those absences from the month of June are now considered unexcused until I get approved for a leave of absence. Which at 17 unexcused absences is grounds for dismissal.

I'm like, this is where you draw the line in the sand? This is the hill you want to die on? Going after someone with a terminally ill husband? Mind you, I have more years of experience and seniority, I have always had Exceeded Expectations Yearly Reviews and when cases get screwed up I'm usually the one assigned to fix them. So really?

We're a fucking social service agency that is supposed to help people in this exact situation.

I've already talked to my union steward. I don't even want to work part time now but I'm still filling a grievance.

Caregiving would be easy if dear LO would appreciate that I'm trying my best but I'm not a fucking nurse. If you want a nurse you should have married one or let me put you in a Home.

Part of the problem this morning was that feeding tube. Yes, a trace amount of Jevity ​got spilled while changing the feeding bag because it was 4 am and he said it smelled funny. Didn't smell funny yesterday but he has gas. Suddenly he noticed today he has gas (has had it since he started the feeding pump months ago). Maybe if he wasn't so reliant on pain meds he would have noticed gas before.

Then complains about something coming out of the feeding tube. That's stomach acid, yes it smells. Doesnt mean the food is bad. So I changed out the feed bag and will have to hunt down more bags tomorrow because the monthly feeding supply shipment won't be here until Tuesday or Wednesday and I have 1 bag left after this one and Bolus feeds are even worse with him.

Why is this my life? Why?

After finding METS in the lung, bones and lymph nodes he told the doctor to exhaust all options and on the POLST he is full code and even agreed to a ventilator. Instead of making the most of the time we have he wants to spend it getting sick from radiation and Keytruda and whatever else the doctors can throw at it.

Today was just continuous complaining on how I make the bed, what food I eat, how the same ice chips from the same water/fridge Suddenly taste like rubber, how I prioritize taking the dog out to pee before I check his blood pressure at 4 am, even though she is 13 and cannot hold it like she used to. Yes, I am being woken to check his BP because that is how they did it in the hospital. And I washed the blankets separately so they weren't both done at the same time.

I'm tired, I make mistakes when I'm tired. I had no breakfast because the batteries in the thermometer were low and I had to get new ones that instant.

I pray for this to end but that's such a horrible thing to pray for that if there is a God that cares that would probably have the opposite effect.

Like most of us my health is at the bottom of the list. I was able to get OTC hearing aids because I have slight hearing loss and he has basically no voice above a whisper. So that doesn't even count since it's more for his sake than mine. I put off having something done for my knee injury, I really need to see a counselor but that's not happening.

I want to work part time just to pay bills without having to use the equity in our home but I feel like he will reject the idea of a Home Health aid. No one will sit with him for 4 hours or watch the dog, my support system is full of people that see this as my wifely duty. When he was in the hospital he barked at me to help the nurses crush his pills, or go find the nurse, anything other than using the call button

This turned into a rant more than a vent

So last night a trip to the ER which is quite common now for my husband

Summarize - July 2025 Squamous Cell Carcinoma of Piriform Sinus (3rd time having cancer, 1998 - Hodgkins, 2008 Vocal Chord Cancer.) September 2025 - SBRT Therapy. January 2026 PET Scan shows metastasis in lung and lobe, Piriform tumor not reactive. Lung Biopsy, Biopsy of original tumor sight.

February started the whole problem with swallowing difficulties until study showed completely NPO. He attempted Minced/Moist diet and got aspiration pneumonia from skim milk.

Fought with insurance for feeding tube, error at hospital delayed surgery until April. By that point down 60 lbs. When officially diagnosed with malnutrition, Failure to Thrive, Anemia, Low Everything.

Chemo Started in May. Each round a hospitalization. Aspiration Pneumonia, Pleural Effusion and then Infectious Pneumonia.

Thoracentesis - went well, discharged and 3 days later back again.

So they're did a CT Scan. No fluid in the lungs but 2 new spots in the spine and the hip bone.

Yup. Shit Just Got Real.

I can no longer protect myself with denial. This is happening and I don't know what I'm going to do without him or what to say.

Cancer Sucks

I first joined this thread as I am the primary caregiver for my husband who is completely NPO due to throat cancer that has metastasis in his lung and is at Stage 4. He has maybe a year to live. If he eats or drinks anything he aspirates and has to be hospitalized for pneumonia. He has no other option for nutrition besides the tube. None.

We got a PEG earlier this year after arguing with the insurance for necessity. (And people wonder why there are Luigi's).

But we started with Bolus for his Jevity and meds because again insurance thought a continuous feed pump wasn't necessary. Bolus feeds were not doing the trick, he continued to lose weight. I joined this thread looking for ways to make those easier on him, find out solutions for some of the big pills that are hard for me to crush due to arthritis, etc. We live in a fairly rural area so it's a dietitian desert out here and liquid prescription meds are hard to come by. We can talk to a dietitian via phone on Wednesday each week and that is it.

Finally in April the oncologist got prior approval after 3rd hospitalization this year for the continuous feed pump. He is no longer losing weight at a dangerous pace but isn't gaining. Probably because he is on chemo.

Yesterday, someone posted asking for info about being put on a feeding tube because they weren't getting the necessary nutrition from eating. I apparently had the audacity to describe some of the drawbacks of a G Tube and was lambasted for this.

I will stick to my Caregiver support thread group from now on and if I have questions about how to extend my husband's life or help him with the depression that he has from being confined to a bed plugged to a feeding tube 24-7 I'll wait until Wednesday and talk to the dietitian.

So another hospitalization. Husband once again, shortness of breath, O2 levels in the 80s, another ambulance ride to the ER. Which is another ambulance expense I will have to argue with insurance about because the ambulance company is out of network. Actually had someone from insurance say "try to use an in network provider or drive him yourself", there is no other ambulance company in this town and when this happens I cannot get him to the car using his walker with an oxygen tank and pretty certain I can't just drive 90 mph through town running red lights if I could get him there.

So, cancer in right lung, turns out left lung partial collapse. Removed 700 cc of fluid. Hospital stay. Not ICU.

Yesterday, Hospitalist told him he could come home today if his bloodwork looked decent. I'm not sure if that is what she said because I wasn't there and he's been getting confused lately. Doctor got there at 8 am while I was still at home in the yard trying to get our stubborn dog to do her business because if I put her in kennel and she poops she pushes the poop out of the kennel onto the floor. And somehow she gets the poop matted onto the top of her head.

And yesterday it hit me. This is my life now. Just this, unless he dies this is how my life is. No more date nights, no more dinners together because he's on a continuous feed pump and is not gaining weight. Every day it's get out of bed (not wake up, because I've been awake since his sleeping pill wore off), crush up his morning meds to go through the G-Tube, give him a bed bath, help him to the bedside commode, clean it​. Mark down what pain med I gave him and when that is done take the dog out. Clean the litter box. Check the calendar to see where I have to take him today. Ask him if he wants to go to the cancer center for IV Fluids. Then prepare for that.

Not to mention figure out what bill to pay using the credit cards, what can wait until we get his disability check to pay because I'm on FMLA. Granted remote work is possible for my job, my direct supervisor has even said he would love if I could work remote because I've shown myself to be productive (even while doing all this) but the head of our office doesn't "want to show favoritism". Like any other employee would care. I think I like my job, I honestly can't remember.

So yesterday I checked his mychart to see his morning vitals and bloodwork, BP was 81/36. That definitely wasn't right (they are supposed to check his right arm, not the left). But for a moment I was wondering why didn't they call me. Does this mean I'm close to the end of my watch?

And I felt guilty for hoping it was.