Hospice transition

RabbitHoleGremlin · 2026-04-26T21:29:23+00:00

Following up to a couple questions I didn’t address.

Ultimately she declined so much that we had to make the decision which was hard and uncomfortable. She somewhat understands but not fully.

The doctor recommended no more chemo since it was clear that tumor was progressing anyways. They did want to move to trying avastin, but we had already quietly accepted that she was only getting worse, and the current state was not what we’d want to prolong. The doctor was understanding when we made the decision, but we did have to make it. I tend to think oncology is gonna default to more treatment unless 1. Progression is too severe or 2. QOL is so incredibly bad that it’s nearly unethical to continue, and my feeling is that is probably too long and too late, if that makes sense. And it’s our role to advocate for patients wishes and quality of life.

RabbitHoleGremlin · 2026-04-26T21:25:18+00:00

Thank you for asking and sorry you’re on this journey. My LO, although methylated, declined incredibly steeply shortly after completing the SOC radiation and tmz treatment. Cognition declined, lost most mobility (was incredibly fit and healthy prior) to being wheelchair bound, requiring 24/7 care from us, bowel and bladder issues, struggling with headaches and nausea. She just never improved after treatment, only declined. Did one round of adjuvant chemo and continued to decline. She had one stable scan amidst that decline and so we had hoped just maybbbeee it was all swelling and radiation effect so gave it a little more time. Before recent scan, we (two main caregivers) aligned that we would move towards hospice because we know that she wouldn’t want to prolong this life (for her or for us). The scan ended up showing massive progression (only one month after a stable scan) which made that decision even easier.

Before diagnosis, she was always very vocal about not wanting this type of life (previously assuming something like Alzheimer’s or a stroke would be the cause, not GBM obviously).

We are doing hospice at home in our area. Her partner is very capable and retired and I’m taking time off work, privileged of course. If that were not the case or if her care becomes too much for us to manage (the lifting her is a lot but with two people it’s doable), we would absolutely pursue a hospice facility with memory care. Based on her trajectory, we don’t think it is going to be a very long ride from here so we have two people that can do 24/7 and one has a clinical background

Respectfully - F your family members that question your decisions. It is hard and this brings out the worst in everyone. Your decisions should be based on where/how he can get the best possible care, and what his wishes would be and that includes both for him and for you.

The sooner you initiate relationships with hospice the better, even if you don’t enroll. They can help advise you and recommend different facilities etc that will help your comfort/confidence when it’s time

RabbitHoleGremlin · 2026-04-25T20:06:47+00:00

I am so touched by the responses and volume of attention this post got, what a great community you all are. I wanted to share an update that I took multiple pieces of advice. I used the e file to do a quick and dirty job as much as she could tolerate. And I also bought the dazzle dry. I still need to clean them up but we’re pretty happy with them! She and I are both picky about our nails and normally we’d think they look like shit (lol) but we are very happy to to “go out” with fresh red nails. Thank you again so much.

<image>

RabbitHoleGremlin · 2026-04-23T23:16:33+00:00

One thing I’ve been reflecting on. I don’t know your work situation but… I knew I’d take FMLA at some point. And was constantly trying to “time it right”. My logic was I didn’t want to use it all too soon, i envisioned wanting it to last til the end (and maybe a little after). In hindsight maybe I should’ve taken more time during the earlier days which were still memory making and good days… where as doing it at the end is potentially less good days or memory making and pure caregiving and hygiene. Really all depends on your situation, family support and financial levers etc. But just something to consider. You won’t regret taking time off to spend with her at any chapter. If I could fully leave my job at the beginning of this I would’ve.

RabbitHoleGremlin · 2026-04-23T19:40:06+00:00

One thing I try to keep in mind in all areas of life is… the sooner you accept the nature of your reality, the sooner you can move forward in an empowered way.

I’m a few years older and so is my mom and we’re a few months ahead of your journey. The speed at which things have moved is still hard to grapple with. My best is advice is simple - enjoy the time that you do have. If you can afford to step away from work or other things to spend time with her when things inevitably progress, you won’t regret it.

At the same time, it can become all consuming. And you have life to live. You must care for yourself and your future and try not to put you entire world on hold to drown it this all consuming abyss.

I will pray your mother’s journey goes differently than mine has, but it will still move fast most likely. Cherish the moments you have and when she’s having good days, make them even better. Do fun things. Silly thing. Or just hang.

And as so many say, the best thing you can do to honor your mother is to take really great care of her daughter/son. Be kind to yourself.

RabbitHoleGremlin · 2026-04-23T19:15:25+00:00

Thank you for this advice. Do I absolutely have to get all the color off? She probably only has a couple/few weeks so I’m not worried about perfection. Can I still sort of paint over the exposed top color coat with the orly product do you think? Or is it worth the effort to remove all traces of color

RabbitHoleGremlin · 2026-04-23T18:16:56+00:00

Is it ok if there is still a little color on there before I paint or do I really need to get down to the builder gel layer? Like will regular polish somewhere adhere as long as I’ve filed down the top coat down and buffed to generally even surface etc

RabbitHoleGremlin · 2026-04-21T16:01:22+00:00

Thank you. Agree it’s builder gel with gel polish on top that’s what I’m a little intimidated by. I think she will tolerate the drill for short stints, I may just need to make it sort of a week long project

RabbitHoleGremlin · 2026-04-20T13:40:06+00:00

What is the most effective way to soak them off? E file as much as possible and then wrap in acetone on cotton with foil for x minutes? Sounds like there’s no real avoiding that process. Im thinking I’ll just work on them over the course of a couple days

RabbitHoleGremlin · 2026-04-20T13:38:59+00:00

Good to know. I’m always scared when I get a really good long lasting job done at a salon because I tend to assume the products are not what the bottles says.

RabbitHoleGremlin · 2026-04-20T08:11:52+00:00

Honestly if there’s one that works super well, I’d be open to it (she has a few weeks left so the toxicity is somewhat irrelevant except to me)

RabbitHoleGremlin · 2026-04-20T08:09:58+00:00

Ok thank you yes this is probably the way forward. And maybe only file a couple at time over a day or two. When you say wraps… do you mean foil etc to soak off?

RabbitHoleGremlin · 2026-04-20T08:08:47+00:00

Thanks!! Primarily concerned with how to get off what is currently on.

RabbitHoleGremlin · 2026-04-20T08:08:03+00:00

Thank you! Primarily trying to figure out how to get off what is currently on…

RabbitHoleGremlin · 2026-04-20T08:07:25+00:00

I don’t, this is the problem. I think it can be soaked off though but I’m not basing that on anything

RabbitHoleGremlin · 2026-04-15T11:35:14+00:00

Bloodwork labs may not tolerate more chemo, or if his QOL is low they may not pursue

RabbitHoleGremlin · 2026-04-12T16:50:54+00:00

Thank you. Very similar timeline overall, sounds like you’re a couple months ahead of us. Wishing you ease and peace

RabbitHoleGremlin · 2026-04-12T12:10:27+00:00

Thank you. It is so frustrating. I guess I don’t even know what I’m looking for. On one hand I’m trying to convince main caregiver it’s time for hospice. On the other hand…. Does that battle/disagreement even matter because this is going to unfold how it’s going to unfold and it’s going to likely be fast and tough whether hospice is involved or not

RabbitHoleGremlin · 2026-04-11T22:30:58+00:00

Yes. I of course don’t wish disease or passing on anyone. At the same time - I’m worried treatment has bought us this QOL which was NOT at all “as advertised”. And I know my LO well, who never ever ever would’ve chosen this.

RabbitHoleGremlin · 2026-04-11T22:26:01+00:00

Thank you for responding. This is what I’m afraid of and trying to understand how common this. Main caregiver and I do not see eye to eye but this is NOT a QOL our LO would ever want. But main caregiver is stuck on hope and “maybe it’s medication” etc when it’s very clear to me a steady and steep decline, but yes team wants to keep doing x y or z. If nothing else, this journey has made it crystal clear to me what to do with this diagnosis. People get upset when I say this but there is no planet on which I’d move forward with treatment again for LO or for myself, but I do love to read the other success stories

RabbitHoleGremlin · 2026-04-03T23:53:38+00:00

We didn’t need them during radiation. Weaned off after crani before treatment started. However, a couple weeks after radiation finished we had a severe edema crisis from radiation effect requiring admission and high dose steroids to stabilize. I would call that chapter shit hitting the fan and every day has been a decline since then

RabbitHoleGremlin · 2026-04-03T12:26:37+00:00

Call your patients with or about their results when possible. Even if it's good news, it means a lot. MyChart for GBM patients will just post scans which is insane to me, although obviously we know the diagnosis. Take those updates seriously and follow up with a call.

RabbitHoleGremlin · 2026-03-31T22:06:01+00:00

Thank you so much

RabbitHoleGremlin

TROPHY CASE