u/swiftiebutnotinacult

Friday my mom went back to the hospital she was on a downturn and they wanted to see if her glioblastoma was worsening. Well she had Covid but the brain is now way worse with spreading and larger tumor. They suggested hospice begins soon so we started it yesterday in the hospital. They are trying to coordinate to have hospice set back up in her old assisted living apartment but that was yesterday morning when she would still barely reply to nurses and she was still taking sips of fluids. In the evening she started having labored breathing, they gave her some morphine for the breathing and she really has been asleep nonstop since then. Now I just don’t see how she lasts more than a few days. She doesn’t respond to me, she isn’t eating or drinking, she is having labored breathing. Isn’t the “comfort” more important for the patient to not have to deal with another transportation to her old apartment? Should I ask the doctors to submit to insurance a new request to just stay here in the hospital? She has her own Covid room and I’ve been sleeping on the cot. It is nice and comfortable and I like how they still are doing the iv Keppra and dexamethasone to prevent any seizures and swelling. They wouldn’t do that in the asssited living hospice.

My mom is deteriorating fast from glioblastoma. We are considering hospice soon. She is in an SNf right now after being in the hospital for 2 weeks. If we moved her back to her apartment could we have hospice there at all times?? I can be there most of the daytime but need to check on my kids at night.

I was hopeful we could at least make the neurooncology appt next week to see if there’s any mutations that could help with a trial drug or med. But my mom has declined so much this past weekend. She is extremely lethargic sleeping a lot. Of course I would think this is the end but she was fully functional 3 weeks ago before we got this diagnosis. She is 81 so maybe it has all hit her harder. She went from her apartment walking around eating fine hanging out to the first hospital because she felt unbalanced. They did scans there first they thought it was metastases so we wasted a week there they discharged her she seemed still weak so I took her to a university hospital they did the biopsy they suspected glioblastoma. Then she got discharges to an SNF but she then got a UTI so back to the hospital for a 3rd time, got strong iv meds and fluids. She seemed to bounce back by last Tuesday she was eating normally talking fine, still weak but at least trying to exercise at the SNF. Now today and yesterday is worse days she is mumbling, weak, sleeping all day. They put an iv fluid in her but she is still out of it. Either we go back to the hospital again maybe it’s a new infection or i just face this is the reality?

2 weeks ago my 81 year old mom was normal fine talking walking, eating on her own laughing with me. Now 2 weeks of hospitals, 2 SNFs, a UTI, increased left sided weakness, and now she’s having trouble swallowing but they tell me the brain mass hasn’t increased much there’s no extra swelling and no extra bleeding but the hospitalist dr is kind of dissuading me from further treatments and like go to hospice. Like right now letting my mom die like this is me just giving up because this isn’t how she was 2 weeks ago. I was hopeful after we find the pathology results next week even if it is a high grade Glio that we could at least try some treatments and maybe a trial. I mean of course being in the hospitals hasn’t helped her. If we could just have a couple weeks where she was kind of back to normal then I would have been fine forgoing treatment now I feel like treatment is the only thing that could give us that. Is that a false hope on me???! She was even eating and drinking just fine on Thursday and Friday and on Saturday is when I noticed a huge change in her responsiveness and I was hopeful it’s just the UTI making her temporarily worse.

This has been 2 weeks of a nightmare. My poor mom was doing great 2 weeks ago. Now we’re facing a likely high grade glioma diagnosis we are still waiting on the official pathology biopsy results. She got the biopsy Monday. I see so many things out there like LITT, Avastin, and even gamma ray/cyberknife. I’m pretty sure these 2 institutions offer those but we’re at Stanford now and so far in the neuroconolgy team she just mentioned “chemo pill/radiation and which eligible trials” but nothing about those other options. Is that because they would be hesitant or insurance issues or would ucsf be better and the way more advanced options or is it just dependent on the final pathology? Should I ask about these when we meet next week? She is 81 so I know she is older but both her parents lived to their late 90s and she was my single parent she did everything for me and I’m just not ready yet. I’m sorry to everyone dealing with this. It’s so rough. Any tips appreciated thank you !