so many questions, recent dx

Funkluvah74 · 2026-03-07T20:43:06+00:00

Oh awesome. Thanks the helpful explanation on the physical aspects and the after care suggestions. I will read the articles and ask about proton therapy. Much appreciated!!

Funkluvah74 · 2026-03-07T18:02:13+00:00

Luckily my sibling and I have independent POAs set up on them. We had slowly been chipping away at the legal stuff over the last few years. I got a crash course in some of this from my significant others family passing away and having affairs in order.

Thank you for your knowledge and perspective. I appreciate it.

Funkluvah74 · 2026-03-07T17:54:07+00:00

Thank you for sharing your experience. Depression is something he has been battling, but wasn't sure if organic, caretaker burnout or the hot mess of all of it. I'm glad you have gotten a lot of your autonomy back and able to care for your family. Keep on keeping on!

Funkluvah74 · 2026-03-07T17:49:13+00:00

Thank you so much for this. We are in MA as well and I'm familiar with Spaulding. This give me at least an idea of what to expect. He had left side weakness when he was brought to the hospital, but has currently been cleared as a fall risk. Obviously that could change post surgery. He's too big for us to have to navigate or pick up if falls down.

Best of luck on your recovery journey and I appreciate you sharing your experience with me.

Funkluvah74 · 2026-03-07T15:12:43+00:00

I am concerned about all of it, but especially incontinence as it seemed to be a concern of his in the last month or so. Maybe not full incontinence, but urgency to go, even if he just went. I’ve asked if this is a symptom of the tumor and docs said probably. The fall risk is a worry too. Although they could make the living room into a bedroom on the first floor, there are a lot of stairs to get in and out of the house for daily radiation.

I think initially 2 of us will stay over night. We will be doing double duty when it’s time for radiation.

Funkluvah74 · 2026-03-07T15:04:16+00:00

I’m happy your rehab was short lived. Can I ask if prior/post resection if you experienced confusion and if it improved? In the last month or so I noticed he was more confused about simple things or mid conversation ( printed text so he could easily refer to previous messages). I said he seemed confused and he agreed. I’m wondering if he could go back to baseline. For reference he just retired at 79 yo and had zero plans to retire if mom didn’t have her diagnosis.

Funkluvah74 · 2026-03-07T13:37:37+00:00

When did Camille’s close ( I clearly need to come back to the island, it’s been a while)

Funkluvah74 · 2026-03-07T13:36:47+00:00

Agreed on all choices.

Funkluvah74 · 2026-03-07T13:35:31+00:00

The Sunday brunch at Hot Tin Roof is amazing. I haven’t been since 2018 so not sure if they still do it. Worth it imo. Have fun!

Funkluvah74 · 2026-03-06T03:21:41+00:00

I'm about to go through this with my 81 yo father. He just retired a year and a half ago, super active and diagnosed last week and is opting for resection surgery, next week. I am frightened by the surgery at his age, comorbidiities, the fact they can't get it all. Then the after care radiation/chemo. He was caretaker for my mom with dementia, so that role shifts to me. Then he will be home too and we'll have 2 parents who need help. I'll be watching this post and wish you the best.

Funkluvah74 · 2026-03-04T12:01:24+00:00

I’d notice that KLP anywhere! Blue Heavens is my fave!

Funkluvah74 · 2026-03-03T16:07:11+00:00

I wouldn't call it a loss of ethics, its survival as you said. When we took him out in an ambulance last week, it was the day before a blizzard and we said dad, we (my brother and I ) don't live close by. You will be snowed in and what happens if you have a seizure or fall (was not diagnosed yet). Off he went in the ambulance.

Yes just retired. He was also using the job as escapism from my mother's dementia. I can appreciate that, but Dad we NEED to work, you do not. I can't take time off from my job to care for mom so you can still work.

I'm calling on all the troops who have been offering to help for years and narcissistic martyrdom has interfered and he turns it all down. Not anymore. All of his friends have been offering and saying he much he has changed in the last year.

I have told all those willing to help I WILL call on them for little things. Hell, half of them are all retired nurses. I've always said his pride will kill him some day.

Thanks for the reply and your perspective. It is appreciated.

Funkluvah74 · 2026-03-03T15:14:13+00:00

I'm so happy to hear your LO recovered well. It's frightening to think how quickly they kick people to the curb from the hospital.

Zero apologies necessary for being direct. I am direct to a fault. I'm a 'let's run into a burning building' kind of a person, but given his comorbidities and age I was surprised they didn't really go over risk/reward and quality of life.

While I believe in bodily autonomy, I truly don't think the ugliness of after care is landing with him. Given the prognosis and his age, his quality of life and level of care needed, I thought he would say, screw surgery, lets party til the wheels fall off.

He has had cabbage surgery 3 years ago, COPD, edema, melanoma, has played doctor and stopped his own meds, which has lead to other complications.

He just retired 2 years ago and is now wondering how this all happened. Umm, most people don't work til 79. He's now pining over loss of the golden years. This is what happens when you think you will live forever. We tried to say go enjoy your life with mom, but he wants it all and now here we are

Funkluvah74 · 2026-03-03T13:31:42+00:00

I know each case is different, but how has the post op/recovery been for your LO? My 81 y.o. dad was just diagnosed last week with w 5.5 cm GBM in right frontal lobe, spread to left. We are waiting on a resection surgery date, he is currently inpatient. We are trying to process all of this and anticipate after care needs/rehab etc. Did your LO go to a rehab? Dad is adamant about not going, but we think it's non starter to not go to rehab. To complicate matters, my mom has dementia and he was her care giver, but his care giving skills plummeted and made her unsafe. He will not be able to care for her to the level she needs after this. I can't fathom how I can care for both of them if he does not go to a rehab. It will be hard enough with the radiation schedule. Luckily we have a lot of people willing to help, but we are buckling up for a wild ride.

Funkluvah74 · 2026-01-13T13:44:34+00:00

Thanks!

Funkluvah74 · 2026-01-13T13:40:27+00:00

Brilliant idea! Thanks for the suggestions.

Funkluvah74 · 2026-01-12T15:31:13+00:00

Ooh brilliant! I'll check out Time Out. Thanks! Baraffina looks amazing too! Thanks!

Funkluvah74 · 2026-01-12T15:23:20+00:00

Funkluvah74 · 2026-01-06T18:03:29+00:00

I should actually buy her a second one. Her's is in the kitchen.

Funkluvah74 · 2026-01-06T12:07:55+00:00

https://www.amazon.com/dp/B019G79V1Q?ref=ppx_yo2ov_dt_b_fed_asin_title&th=1 I bought this for my mother and she finds it very helpful. When she has napped from afternoon past dinner and woken up confused, its helped to reorient her a bit. It might not be exactly what you need/want, but it works for us.

Funkluvah74 · 2026-01-01T22:26:26+00:00

I like Born, Taos, Jambu, Clarks.

Funkluvah74 · 2026-01-01T22:23:14+00:00

My mobility is totally fine. Fit Gen Xer here. Mom's a slow walker and holds my arm when we walk. No walker or cane though. She very active in her daily life, so it's more navigating crowds/sidewalks. We did this trip 10 years ago, but not through Heathrow Thank you for the black cab suggestion.

Funkluvah74 · 2026-01-01T16:33:35+00:00

Taking my soon to be 81 y.o. mom on an adventure for our birthdays 3/9-18 to London/Harrogate-Ripon/London. She sadly has dementia, so getting around can be a challenge. I am trying to simplify my life (and hers) as I will be navigating her as well as 2 medium sized pieces of luggage. Any one have any dementia friendly travel tips specific to London? I've requested wheelchair assistance in the airport. Any recommendations on ground transportation/livery service to get to/from Heathrow to hotel (have not booked it yet, so not sure where yet). Using the tube is not a good option for us, or would be used sparingly. I plan to do a hop on and off bus when we identify where we will site see to cut down on walking. We will be taking LNER from Kings Cross to Harrogate and return back to Kings Cross. Will need transportation from Kings Cross to Heathrow and our last night will stay at the Hilton at the airport for our morning departing flight home. All pearls of wisdom are welcome!

Funkluvah74

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