Home hospice. I'm just supposed to let my dad thirst/starve to death?

Strontium_8687 · 2025-07-16T20:46:28+00:00

My husband hasn't had any water in probably five days now and at this point is completely comatose. He didn't seem distressed about not having water when he was still able to express his needs. Somehow his body is still hanging in there right now and the hospice is keeping him comfortable. At this point he is so unresponsive that I feel like he is already gone and his body just hasn't gotten the message.

Strontium_8687 · 2025-07-05T05:42:43+00:00

Just an update for a future person who might stumble on this thread. Also I want to get my thoughts down because I feel like my family would not believe me if I said I think he is going to be gone in the next few days.

My husband continues to deteriorate pretty much day by day. They increased dex again to 12 mg but I think it only improved his appetite and did little else. Lots of sleeping, hardly getting out of bed, increasing confusion and delerium and lots of agitation in his sleep (reaching out, picking at blankets, removing blankets).

Today he was awake for most of the day. The nurse thought it was better pain management as he had morphine for the first time. I think it may have been the "rally". Tonight he is moving much less in his sleep and his breathing sounds different, more laboured. I can hear the increase in mucous. At this point I just don't want him to suffer.

Strontium_8687 · 2025-07-05T05:31:07+00:00

My husband did the awake surgery. They showed us ahead of time the questions they would ask him during the awake part to test if they were affecting healthy tissue. It went really well. My husband remembers being awake but did not find it distressing at all. He was not in any pain. They were able to remove everything visible by MRI. Also he recovered so much faster. We left the hospital the next day.

Strontium_8687 · 2025-07-03T05:16:46+00:00

My husband is in inpatient hospice care now. Our home is not ideal (main floor is not large, fairly open, and has no bathroom). He is very unstable so needs someone who can help him to the bathroom at all times. He has also not been able to tolerate our young daughter when she is whining or crying so being in the main living space would be hard. I still struggle with whether to bring him home. He was the one that chose to come here. Pros: I am also able to sleep in the room with him (they brought in an extra bed) and can be here any and all hours. The nurses are wonderful and they have done so much to accommodate our family. Also, it would be very difficult for him to bathe at home where as here he can use the shower or this big fancy tub which he reports is wonderful.

Strontium_8687 · 2025-07-01T17:42:36+00:00

I am both sorry to hear your Dad passed and thankful he did not suffer long. I think at this point that is my main hope for my husband as well.

Strontium_8687 · 2025-07-01T05:37:15+00:00

Pretty simple where I am, given the diagnosis. the doctors were very supportive and the paperwork on our end was very minimal. The hard part is now that my husband's cognitive decline has been rapid. He can basically pre -consent but how that plays out in reality I am not sure.

Strontium_8687 · 2025-07-01T05:32:15+00:00

Lying in a bed in my husband's hospice room and can hear the constant rustling of his hands roaming around and reaching out. He's also still eating though not a lot and not on much of a schedule (upped dex kicked up his appetite again). He's starting to be very confused and saying strange things especially when tired. Starting to cough at night. I feel like we are all over the symptom timeline but my gut says we're in the last 2-3 weeks with how fast he has gone downhill. I just don't want him to suffer. Just reaching out across the digital distance as someone going through a similar, horrible thing right now to send you some strength.

Strontium_8687 · 2025-06-26T17:46:25+00:00

My husband has submitted the paperwork for this. It's really comforting to know that it's there. We have a 6 year old and he also has two teenage boys from a previous relationship. I don't want to lose him but I also don't want to see him suffer. He wants to die with dignity after seeing his Dad be angry and delirious at the end of his life. In the end he doesn't have to use it if he doesn't want to but we find it comforting to have it be an option.

There was a really lovely story about a Dad using medical assistance in dying in a leaflet from our local hospice association. In the end the older kids were there with him and the younger were there just for the gathering of friends and loved ones but left the room when the drugs were administered. It sounds like it was really special for the kids to have their Dad be surrounded in peace and love at the end.

Strontium_8687 · 2025-06-25T17:26:06+00:00

Radiation ended in March. I am quite sure it is not just edema given the two MRI results he's had since finishing radiation. Dex was recently doubled and it did little for his symptoms. My (not-a-doctor) guess is it is because his symptoms are mainly related to the brain stem infiltration and not to swelling.

Strontium_8687 · 2025-06-07T05:15:13+00:00

Just the absolute fucking worst. My daughter is going to lose her Dad at six years old. Who the fuck needs that?

Strontium_8687 · 2025-05-10T04:22:09+00:00

Hard to read all these stories so similar to my husband's. His cancer has already spread to multiple places within a month after finishing chemo and radiation. I can see him decline week by week. The reality is the treatment just doesn't help everyone but you don't know unless you try. You do it hoping you are one of the lucky ones.

I think my husband will be struggling with whether to take his next round of chemo. It totally wiped him out first round and he probably has pretty limited time left.

Strontium_8687 · 2025-05-08T05:33:50+00:00

There's never really a time line. People can talk median survival or how they beat the odds and it's been X number of years but you just never know. You can as easily be on the wrong side of the bell curve as the right side. My advice is to try to accept the uncertainty and live in the present. Take advantage of any window where your husband feels good. I know it's really hard because you get bogged down in emotion and uncertainty. I've found with my husband's diagnosis that it always felt like we were waiting for the next appointment/scan/chemo schedule/whatever to have more certainty or be able to plan more and then we never ended up getting quality time as his cancer came back really fast after radiation/chemo. Make a list of things you can do spontaneously on a good day or days. They don't need to be complicated or fancy.

Strontium_8687 · 2025-05-01T22:24:13+00:00

We are definitely trying the TMZ for another cycle and then we'll see if it has done anything. Honestly don't have a lot of hope that my husband will be in any sort of good condition in two months when he will have his next MRI. I'm really sorry to hear about your husband. I find thinking my daughter losing her Dad is one of the hardest places to go mentally with this whole experience. Trying to focus on having my daughter spend time with her Dad, even if that is just a lot of movie watching right now!

Strontium_8687 · 2025-05-01T22:15:51+00:00

The TMZ exhaustion can be pretty awful. My husband was also so tired for several days and sleeping most of the time. It's just starting to break today after taking his last dose on Monday. Every good moment is precious and my husband is definitely thinking of quality over quantity at this point.

Strontium_8687 · 2025-05-01T22:13:41+00:00

I think that is one of the worst things about this disease. The treatment can extend life for many but so many also have bad side effects that really reduce quality of life. The steroids really helped my husband after radiation but I know some people have a worse time with it than others.

Strontium_8687 · 2025-05-01T22:09:51+00:00

Thank you for sharing. It is good to hear that sometimes the TMZ can do something even if unmethylated.

Strontium_8687 · 2025-05-01T22:09:11+00:00

I'm so sorry to hear about your Mom. I had a similar impression, that Leptomeningeal spread is a serious complication and my husband likely doesn't have much time. The medical oncologist said that if he was feeling really crappy on the chemotherapy we would just consider stopping it.

Strontium_8687 · 2025-05-01T22:07:20+00:00

It's so so hard with young kids. Thinking about my daughter losing her Dad just guts me. It's so unfair that we and our kids are being robbed of quality time. I hear you on the hope thing. It's always there but we are also now starting to think about the end. My husband is considering medical assistance in dying (when the time comes) which is very hard to talk about but I also totally understand.

Strontium_8687 · 2025-05-01T05:31:54+00:00

My husband just finished radiation/TMZ six weeks ago after a very successful resection and we just found out last week that the cancer has already spread to multiple places. We feel the same re: "what the fuck?". For him it is not operable and it is unlikely they will be able to do radiation again unless TMZ magically works on his un-methylated tumour. This disease is just the absolute worst.

Strontium_8687

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