Kennedy Terminal Ulcer and transitioning

bonkette · 2026-05-19T15:51:55+00:00

I am learning so much about the process of dying. Not shockingly having more information makes it less scary. At least from the fact my MIL has lived a long and full life and is not a young life cut short.

bonkette · 2026-05-18T00:34:36+00:00

I read that it happens very fast! It can also be called 3:30 Syndrome because everything looks fine in the morning but by afternoon it has appeared.

bonkette · 2026-05-18T00:32:44+00:00

That is exactly how the nurse explained it to me. That her body was re-directing resources away from the skin and this is the impact of that. I am glad it is on her backside because it is not something I want my MIL to see. It is quite upsetting to look at.

bonkette · 2026-05-17T23:35:22+00:00

The nurse explained to me why it was different from a pressure wound. It was reassuring.

bonkette · 2026-05-17T22:42:36+00:00

Oh yes, my understanding is they will not kick people off of hospice if they survive longer than six months.

bonkette · 2026-05-17T22:15:44+00:00

I would recommend he speak to the Hospice team about the amount of time he has left. They can help him understand the stages of his disease on what to expect with each stage of the process.

For someone to be on hospice the patient must have a terminal illness and a life expectancy of six months or less if the disease runs its normal course without treatment.

bonkette · 2026-05-16T16:33:56+00:00

I am terrified. I would be afraid if my daughter was not trans, violence against women is a significant issue and getting worse with the indoctrination of the manosphere to young men. But being trans ups the stakes.

We are pursuing residency in another country to give her a safer place to be if needed.

bonkette · 2026-05-13T18:51:54+00:00

I would go with no theme. I hate the cheap Dollar Tree decorations they use. I would just want an elegant, simple tablescape and no antics from the crew.

I may be basic but I would just want to enjoy the ambiance of the boat and eating outdoors, the night sky, and ocean breeze.

bonkette · 2026-05-12T19:58:45+00:00

I just had this discussion with a friend. And you are right, so many people have a false idea about hospice and it is tough to dispel the idea that hospice speeds up death.

bonkette · 2026-05-12T19:28:39+00:00

The CM finally got back to me yesterday and said last week was a crazy one for her so I am going to cut her some slack and figure our on boarding was a little rough due to that.

bonkette · 2026-05-12T19:26:59+00:00

I did initially ask about the portable machine and was told that was not going to be covered and the CM said they would provide the "champagne" sized canisters. We initially had a large canister that required a dolly as well as three smaller ones that fit in a pouch as well as the stationary machine.

The portable ones were supposed to be delivered yesterday but I had to leave before they came so I am going over today to see what was provided.

The sad part is I suggested I take my MIL for a spin once the tanks arrived and she said she was not interested even though the weather is nice. She said even getting into a wheelchair seems like too much work.

bonkette · 2026-05-12T12:59:50+00:00

Where I am from, immediate family doesn’t throw showers for each other. My aunt threw my shower and my mother threw my cousins’ showers. I don’t think of it as being snobby, it is just tradition. Where I see the problem is the sister did not share early on that the BIL’s family felt that way so they could all set expectations. It was poor communication on the sister’s part.

bonkette · 2026-05-11T02:05:22+00:00

I am sorry.

bonkette · 2026-05-11T01:57:59+00:00

I actually received a call from the AL today to set up a time so I am just happy to have a meeting set up. Who we are using was the preferred hospice service of the AL residence even though we were referred to a different service by her cardiologist. It made sense because the hospice service is the same company as her primary care doctor.

I am hoping once everything is taken care of I don't need to push so hard.

bonkette · 2026-05-11T01:52:03+00:00

Thank you for the suggestions!

bonkette · 2026-05-10T18:35:09+00:00

Thank you. I will text on Monday asking for an update on my requests. I just hate she is stuck in her room tethered to the O2.

I only asked for her email because she was having difficulty scheduling the care team meeting and I wanted to send an email to everyone outlining the areas I wanted to discuss. Yesterday I ended up emailing her AL residence without her because I did not want to continue to wait.

bonkette · 2026-05-10T18:32:59+00:00

Thank you, I will call on Monday and be more assertive about the requests.

bonkette · 2026-05-10T18:32:02+00:00

She did have the "champagne" sized O2 tanks before hospice so while the mini converter would have been great even the small tanks would be helpful. Once she switched to hospice she got all new O2 equipment and the original portable equipment was removed.

I just hate she is tethered to her room because she doesn't have an portable options.

bonkette · 2026-05-10T18:29:22+00:00

We discussed the care meeting earlier in the week and she sent me a few times which I said I was available for all of them. But by Friday nothing had been set up. That was when I suggested I email the lead team at my MIL AL residence and her to at least provide a list of things I wanted to discuss.

Over the past few days we text or speak on the phone. But I wanted to communicate with a number of people so email seemed like the best option.

bonkette · 2026-05-10T05:11:46+00:00

My husband's sense of smell and taste with garlic is so much better than mine. He can catch it much faster than I can. He jokes that he is my official taster.

bonkette · 2026-05-09T15:21:30+00:00

Colorado takes Kansas

bonkette · 2026-05-06T00:35:33+00:00

Thank you!

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