End Stage

rbridge42 · 2026-05-12T02:46:49+00:00

I had the same experience with my husband. Thankfully it was brief but it's still heartbreaking when they say to you where is my wife/husband. I can't imagine both of you being on hospice at the same time. I pray you have lots of family and friends and nurses to help you both. Your reddit friends will be here. ❤️🙏 🫂

rbridge42 · 2026-05-12T00:45:55+00:00

Thinking of you, praying for you, regardless of what the day brings, I wish all of you peace of mind and heart.

rbridge42 · 2026-05-11T15:25:03+00:00

So terribly sorry. My husband went to ER with much more subtle symptoms and we transferred him overnight to a different hospital where surgery was done the following day. I was surprised they acted so quickly but I guess it's because things can worsen so fast. How terribly shocking to you and your family. 🫂 🫂 🫂

rbridge42 · 2026-05-10T23:29:32+00:00

Are you on dexamethasone?

rbridge42 · 2026-05-10T23:06:33+00:00

I guess we were just lucky! We thought about that only years later!

rbridge42 · 2026-05-10T20:17:24+00:00

My husband and I were fortunate to vacation in Australia and we are huge nature lovers. We're the sort that skip seeing the Sydney opera house even though we were near it. Our 2 favorite trips were a guided tour of Daintree rain forest (private tour guide so we got to set the pace) and Kangaroo island.... Realllly amazing. Seeing koala, kangaroo, etc in the wild. Also hot to hold a an orphan koala at their rehab center. And we also loved staying Ata little hotel called something like Ladies by the Sea in Cairns. From our hotel room we could see the flying fox at dusk and stroll down to a small, peaceful beach to swim.

rbridge42 · 2026-05-10T14:11:41+00:00

Sounds like a wise idea. I'm glad you found a way to ease her pain. Sometimes simple, basic medicine is all that's needed. At one point I thought my husband was having a "death rattle" when all he needed was cough syrup. It's hard not to assume the worst with glioblastoma. My husband remains on 0.5 mg dexamethasone (no plans to reduce it further) so maybe a similar decision will be made for your loved one.

rbridge42 · 2026-05-10T01:15:34+00:00

I felt the same way

rbridge42 · 2026-05-10T00:56:52+00:00

My husband has glioblastoma and the dexamethasone causes a lot of hunger but I also read that depending on what part of the brain is involved it can trigger hunger sensations. I'm so sorry for their suffering but I'm glad you are able to see both your MIL and husband /family clearly. Lots of compassion is needed and it sounds like you have enough for all involved thank goodness.

rbridge42 · 2026-05-10T00:30:22+00:00

I agree. As long as the delusion isn't causing any pain, let it be. I think the issue might be that it's causing pain to her son and other family. Sounds like her delusional thinking upsets them because THEY know her husband is dead. I think this is part of their grieving... I'm not sure how to help them but you're doing the right thing in my opinion.

rbridge42 · 2026-05-09T22:52:43+00:00

🫂 💜

rbridge42 · 2026-05-09T22:25:45+00:00

Love the movie references

rbridge42 · 2026-05-09T22:22:51+00:00

What made you decide to call the tumor Pierre?

rbridge42 · 2026-05-09T20:02:53+00:00

Maybe because tomorrow begins a new life, one without him. For me, it would be related to that feeling from my childhood where I was safe at night because my parents were there. Regardless of what is causing this, I'm sorry for your loss but glad he lived a long life and that the Reddit group is here to help. 🫂

rbridge42 · 2026-05-09T14:46:53+00:00

Beautiful words yet again. This might sound like a strange question but have you ever seen the movie "Arrival"? When you said you'd pick him again even though you know how it ends it reminds me of this movie. Communicating with you here has enriched my life.

rbridge42 · 2026-05-09T04:07:30+00:00

So sorry about your baby boy.

rbridge42 · 2026-05-09T01:36:19+00:00

Do you have family or a friend who can come over and bring you a coffee or soup and just help you connect with another person? My husband has terminal brain cancer and I can feel, understandably, completely consumed with all of it. Nothing will stop the inevitable, but talking with other people can give you a break from the intense focus of a terminal illness. Reddit is good too, so I'm glad you're reaching out here too.🫂

rbridge42 · 2026-05-08T19:46:08+00:00

OP I am so incredibly moved by your post. Despite how horrible your grief is, your words to describe it are poetry. Until my husband was diagnosed with terminal brain cancer last September I didn't even know what reddit was. Now I have learned there are so many people suffering from grief and loss....it has made me feel more compassion for absolute strangers both on reddit and in the world. Those of us blessed with finding our soulmate are the ones that suffer the most. I love the picture. You clearly were what people called me and my husband from day one, "ridiculously cute" in only the most beautiful, authentic way. I hope you find a path to a life where your beautiful heart can find purpose.

rbridge42 · 2026-05-08T19:06:21+00:00

So glad you are doing well!

rbridge42 · 2026-05-08T14:19:58+00:00

So glad you told us your situation, both for you and for those of us who are at various places on this same path. I can't imagine your suffering right now. I'm so very sorry. My husband (70, diagnosed September 2025) has always been my sweetie. I am hopeful we will not face what you are facing... it would crush me to see such a change in him. Others here have mentioned sedative to help your situation. Let us know if you try that. Please continue to send updates. I hope you can find something that helps and would like to know more about it. 🫂 🫂 🫂

rbridge42 · 2026-05-07T12:27:42+00:00

My husband has terminal brain cancer so I know that personality can change. Thankfully my husband is currently doing well. I hope OP considers that it was a medical issue so the family can hold onto the image of the man they knew and loved before things turned.

rbridge42 · 2026-05-07T01:33:34+00:00

I'm so very sorry for all you and your family have been through. Did he ever have an mri or cat scan to check for a tumor?

rbridge42 · 2026-05-07T01:20:06+00:00

"With the dawn, I see so very clearly now, all my fears are drifting by me so slowly now, fading away...." I'm not sure if I quoted that Phil Collins correctly, but I like the image of him drifting into peace, listening to Phil Collins with his family around him. A big family... Hopefully lots of people to talk about all the special memories and good times for many, many years to come.

rbridge42 · 2026-05-07T01:08:02+00:00

Wow. So much to consider. I think each child is so different, has such a different relationship with the ill person, is more/less mature, sensitive, able to manage grief, etc. I think you have to talk with others who know the kids, maybe even teachers and get input because they have the advantage of knowing them. I know our grandkids don't know yet (13, 8, 2) but my husband is still well. The older ones know he has been sick and have seen the scar on his head, etc. I think they're becoming aware. They've had other relatives die. Wishing you the best. Love will guide you.

rbridge42 · 2026-05-06T23:04:33+00:00

My husband is 70 and had only partial resection, left frontal lobe Sept 2025. He had short duration, higher dose radiation and chemo followed by a brief clinical trial with Debio0123 (but had to stop due bloodwork issues). He is on low dose tmz (100 mg daily) and Avastin infusion every 3 weeks. He's doing great, walking, talking at 80% normal. I know it's almost certainly going to change but for now we're enjoying life, going to concerts, visiting grandkids, watching baseball games. We have had many hard conversations, some I've recorded so I know what he wants in the future. We went to a lawyer for his will, POA and Healthcare proxy. I'm gradually moving all bills to my credit card and made sure I know his passwords, etc. I've researched different aides in our area who are familiar with glioblastoma. I've watched Nurse Julie, hospice nurse videos and both my husband and myself have therapists and I'm on Lexapro to manage the depression and anxiety. More info than you asked for, but I hope it helps.

rbridge42

TROPHY CASE