u/Ok-Director9147

So I have been getting a bit of grief lately from my not returning calls or calling with updates, etc.

First of all, before all this even I hated talking on the phone. It feels like work since that is what I do for work.

Second, he still has cancer, not in the hospital and hasn't died so there really isn't any update.

Third, I do not have time for chit chat. I'm pretty sure I re-washed the same load of laundry three times because I couldn't remember which load was done and folding is a luxury.

People do not realize how much I have to do. He's on oxygen and sometimes his legs give out because he's weak and a fall risk.

He is completely NPO so not only does his food go through a PEG tube but also all of his meds which I need to crush, dissolve in water and make sure not to clog the tube. Plus 3 water flushes a day outside of the meds. Which makes more pee. Which since he is on chemo is a whole thing of wearing gloves to clean.

Yes, we have a visiting nurse that comes 2x a week but she's not here at 4 am when he has an accident, or needs pain meds or needs unhooked from the food pump and walked to the toilet to poop. Or to clean the bedside commode if he needs it quicker when he has diarrhea.

People just have no idea.

So I've been off on FMLA since mid-March. It's common knowledge that my husband has Stage 4 cancer w/Mets in the lung and nodes.

About a month ago they started a Morale Booster committee and had an idea to put out blank cards for everyone to write anonymous positive messages. There are 50 people in this office.

Today I went in during the lunch hour to get a box of masks, box of latex gloves and my sewing basket from my desk.

I forgot about this project because I was on FMLA and didn't get a chance to participate but saw a card on my desk. I thought how sweet. Then opened it.

Only 4 people signed it basically all saying "thank you for helping me with...." That was it. No "thoughts and prayers" just thanks for knowing how to do your job and mine.

Here I am hoping for some encouragement as my husband is hospitalized with pneumonia, temp of 102.8 probably a reaction from his first chemo treatment; his prognosis is 30% chance of 2 years survival if the treatment has no complications. And week long hospitalization seems like a big complication, so that 30% has nosedived and 2 years seems unlikely.

I get more appreciation from the nurses on his floor than my coworkers. Probably because I empty his commode, urinal and nausea bags but still. (I've accustomed myself to this).

It just struck me the wrong way I guess.

So here's a summary of my husband's health. Stge 4 metastasis in the lung. On oxygen, enteral feeding tube because he is currently NPO due to high aspiration risk. Since he went longer than necessary due to issues with the clinical trial his malnutrition has gotten to the point where he has very little muscle mass in his legs and is a fall risk.

So, I have a job that is hybrid remote 2 months in office and 2 weeks remote. I had been offered a transfer to another office that would have absolutely zero in person contact with the public but would have to be in office for up to 6 months for on boarding. I anticipated it would be less for me because I had worked in that location before. They wanted me to start May 18. I asked if I could start either June 1 or June 16. Preferably the 16th because by then we should have more in home care help and he may have recovered a little more since the insurance finally approved the continuois feeding pump.

Today, found out still start on the 15th, still in office and even though same employer would have to re-do my FMLA paperwork. So, because I know he won't improve enough to be alone in 2 weeks I had to decline the position.

Now my current manager is saying I cannot work any overtime from here on out because I'm on intermittent FMLA right now, so I cannot even sign up for it. We have to sign up by a certain date and I'm still using FMLA time on the deadline. Mind you, during my upcoming remote rotation I would only be taking time off for appointments as I can manage most of his needs during breaks, lunch and during non working hours.

And to find out the office crybaby snitch ended up getting the job after I declined it. So I cannot even say anything or she'll accuse me of bullying and possibly threaten a civil lawsuit (she's done that before).

They are having a potluck on the 13th, I might pop in, if I'm allowed. Just to write "you're welcome" on her card.

I just want to take a quick sec to say how much I appreciate this group. I joined a "support group" on Facebook yesterday and it was just goofy memes and political crap. Like any of us have time or the inclination to follow politics. I don't have time to debate if the country should be pro Israel. I'm watching my husband die. And goofy, funny memes, how is that support?

Thank you to all of you.

Any widows/widower out there when your watch ended how did you deal with The Room?

Not there yet but for context my husband has Stage 4 Metastasic Squamous Cell in the lung. Not curable, palliative care at this point. The master bedroom is the only bedroom with an attached bath with all the safety features; so the master suite is where he sleeps, stays, receives care and where we have his oxygen concentrator, PEG tube feeding pump, IV, bandages, etc. We haven't slept in the same room since last October.

What did you do with the room? Paint it a cheery color, close it off, use it for storage or just sell the house and buy a condo.

It's difficult because we all know before the sickness it was a place of joy; then it becomes hell on earth.

What helped you?