u/Joshua_ABBACAB_1312

My partner had gotten to the point where she wasn't eating a whole lot, and walking half a block winded her and often made her nauseous. She had a sudden decline. I posted about it while we were dealing with it. With the decline came with refusing to eat solids entirely, to having to be given water instead of her just drinking when she's thirsty. She also couldn't walk anymore, at least not safely, as she would risk passing out while walking.

I had called her phone clinician, and they couldn't do anything and just said to take her to the ER. So I carried her down the stairs and into a Waymo, and we got our asses to the ER.

Long story short, she had a UTI, which then lead to her being dehydrated and malnourished. She was in the hospital for one night, and the doctor recommended hospice, so we got her home and started hospice. She was doing well in hospice, seemingly getting better, even walking to the bathroom on her own despite me telling her to stay in bed. In fact she got so much better that the hospice doctor (who is an angel btw) decided to take her off hospice and get her into palliative care.

We were so, SO happy to hear that she still had years left in her.

But then a day after completing her antibiotics, she had yet-another sharp decline. Eating and drinking nothing. Mumbling incoherent words. I had started using the bedside commode for her, but she couldn't even get on it by herself. I had to lift her up and place her on it.

I was just about to get her onto the commode when she, out of nowhere, had a tonic seizure. It lasted about a minute to a minute and a half (but it felt like forever), which is considered long for a seizure. Her legs gave out and she absolutely sandbagged. I had to catch her and lift her by her underarms onto the commode. While sitting on it, her eyes rolled into the back of her head, her head was trying to bend back (I was holding her head to prevent it from going too far), she was hyperventilating, and her mouth was left agape. I tried to get any sort of response by waving my hands in front of her eyes, but she didn't even blink.

She came out of the seizure but was still unresponsive. I called hospice and they said they'd send a nurse. While waiting for the nurse, she had yet-another tonic seizure on the commode. This time I didn't want to risk her legs giving out again so I actually lifted her onto the commode. The seizure started as soon as she was back on the commode. It had the exact same characteristics as the last seizure. Called hospice again. They said a nurse will be there.

One thing I didn't mention is her hospice doctor gave me her direct phone number. I knew that if I didn't do anything, then my partner was basically on her death bed. I couldn't stand the thought of never being able to make her laugh again, so I shot the doctor a text, just asking for any suggestions or input that maybe I haven't already heard. She called me right away, and even though she didn't suggest I get her back into the ER, she presented it as an option. So that's what I did.

This time I couldn't just carry her to a waymo and risk another seizure, so I literally had to call 911 and the fire department came to extract her to the hospital.

She just completed night number five during her second time being admitted to the hospital. It was a fight, but she's back to being responsive. She sadly hasn't regained the ability to eat or drink/swallow, so we had to make the difficult decision (with her approval - she said that she would want to be treated even though she is DNR) to have a PEG installed into her abdomen. This is to keep her nourished and hydrated. Her hospice doctor believes the dehydration caused the seizures. She also had sepsis but they couldn't figure out where it came from. It wasn't the UTI returning.

One thing they didn't tell me before we authorized the PEG is that part of the process is shoving a tube down her nose to her stomach. When the doctor finally told me about it, I didn't know how to feel. I knew she wouldn't want that experience, but it would also be temporary (unlike the PEG itself). I still went ahead with it.

Now let me tell you: In 18 years, I've seen this woman cry a total of four times. The first time was when we watched The Fault In Our Stars in the theatre. The second time was when we were watching One Nation Under Dog and they showed a shelter gassing puppies to death. The other two times were my fault. Well I saw her cry a fifth time while they were shoving that tube down her nose and esophagus. I felt nothing but regret as I saw them completing the task while she cried and told them to get off of her and to stop over and over again, while coughing from the tube.

She is recovering from the PEG surgery now. The current plan is to get her home on palliative care. They won't pay for her incontinence materials like hospice would, but they will get us a hospital bed and help keep her alive and well. I'm still dealing with Medi-Cal and IHSS, but I have already gone on leave from work. So as of now I have no income and I am scared to death of not only losing her, but also our home.