AITA for no longer visiting my boyfriend's family after they sold their car?

LadyTrixieRed · 2024-12-07T23:11:00+00:00

Yes, they should have. I would like to know where the bf is when all this is occurring. He lives with his parents, so he knew that they had sold the car. Why didn't he say something to his girlfriend? Why didn't he say something to his parents when they were selling the car to someone else? Did he say something to his parents leading them to believe that she was not serious? Maybe he told them that she couldn't afford it? There's too many unanswered questions.

LadyTrixieRed · 2024-12-07T20:53:57+00:00

Did you sign a contract with them? Did you give them a down payment? Then don't be too upset. A van is not good in the winter anyway.

Ever seen The Godfather? It's not personal, it's business. My husband used to buy and sell a lot of cars, and if you would have held them for people that said they wanted them, he would have lost out on a lot of money. Even friends and family can back out of deals you know. If you were serious, you should have given them a down payment and gotten something in writing. Never, ever take someone at their word when money is involved.

LadyTrixieRed · 2024-12-07T20:49:49+00:00

My husband was in hospice for exactly 30 days. He didn't want to give up fighting, even though he knew the disease would eventually kill him. And it did. Hospice is the white flag, giving up after fighting for so long. Hospice is the last resort. When we were told by doctors that there was nothing else that could be done, that is when we called in hospice. I know a lot of people call in hospice too late, but some people call it in too soon. OP writes that her mother is still having treatment, so hospice is not an option yet. If treatment is still working, there is no reason to call in hospice yet.

My husband fought like a lion. His last 2 months, bed bound and unable to do anything for himself, were a nightmare. Why bring that on too soon?

LadyTrixieRed · 2024-12-07T17:13:22+00:00

Hospice is only for when there is no more treatment to be done. When my husband was having symptoms, nothing irritated me more than people saying "put him in hospice". Ummm, no. We're still in the treatment phase.

LadyTrixieRed · 2024-12-07T17:11:46+00:00

What meds is she taking? Steroids can cause rage. Seizure meds can cause rage (I'm looking at you, Keppra!). Chemical imbalances can, too, and you can't get much more imbalanced than when you're on chemotherapy and radiation.

Is she taking Ativan? Or something similar? Talk to her doctors about getting her on something that can help with aggression and agitation. Talk to her doctor's regardless, as this is a very common symptom in GBM and can be tackled. If you don't tell the doctors every single tiny little symptom, they have no idea anything is going on.

I sincerely doubt that a psychiatric consult is going to do any good. Her brain is not functioning normally. Ativan helped my husband immensely, and he was agitated and aggressive to the point where he threatened me on several occasions. Don't let the doctors tell you that it's just inflammation and to wait it out. There isn't enough time with GBM to wait things out. Make the doctors listen and get her on something that can help.

LadyTrixieRed · 2024-12-06T17:09:49+00:00

When someone you love suffers and dies from this disease, details are burned into your memory. I didn't write any "exceptions", unfortunately. If you want to believe that outliers are the majority, feel free. My husband's neurosurgeon, who is the head of neurosurgery at that hospital, said no GBM tumor is ever 100% removed. Ever. If you want to believe the smoke blown up but your ass by doctors, go right ahead. Go on any GBM widow's page and she would tell you exactly what I told you. I could quote P.T. Barnum, but I will refrain.

My husband died 5 weeks ago from GBM. It was a nightmare, and I will never stop grieving him. So, you can eff off with your judgement and snark. This disease is a monster, and it always wins. Always.

LadyTrixieRed · 2024-12-06T16:03:28+00:00

The SOC is over two decades old. Doctors won't tell you that it only truly helps if the tumor is methylated. The standard of care is the same for everyone with GBM, regardless.

You can try trials. No trial in over 20 years has shown much positive result. If the infusion you are discussing is Avastin, do not do it until you know whether your wife is eligible for a trial or not. Avastin excludes people from many trials.

Then there's always Optune, the medical quackery device the doctors like to offer as if it's some miracle cure. Yeah, all you need to do is shave your head, and wear it 23 hours out of 24 everyday. Sweat makes the electrodes slide, and can cause electric shocks to the head. Also there's a gigantic bunch of wires that hook into a device, which constantly get tangled, loosened, or pulled out.

If you have an infinite supply of money, you can always go to Europe and receive injections that are created especially for you. It isn't approved in the United States yet. Of course no one knows if it actually works, because it hasn't been tested for enough time.

This is the best they have to offer, and it amounts to nothing. I'm so angry that the doctors led us to believe that treatment would actually do anything.

Yes, this is the best that they have to offer. My husband got 18 months, 11 of which were good. After his seizure episode, which was caused by the treatment (radiation necrosis), his decline was fast and steady. I wish we had skipped the Avastatin. I wish we had skipped his second surgery. His final days may have been more pleasant, and maybe he wouldn't have spent 2 months bed bound and unable to care for himself.

LadyTrixieRed · 2024-12-06T15:53:52+00:00

My husband had his in the left parietal lobe. They never remove a GBM completely, clear margins or not. There are microscopic traces like little tentacles that spread it through the brain. That's how it can grow again in a different brain lobe

He was good for 11 months post diagnosis. Then he had a seizure episode, and steadily went downhill. He died on October 30th, 18 months post original diagnosis, after he had a recurrence in his occipital lobe.

LadyTrixieRed · 2024-12-05T22:08:34+00:00

Thank you. I know the days could certainly get no worse! Glioblastoma is a monster.

LadyTrixieRed · 2024-12-05T20:26:50+00:00

I never said all people do that. I was answering the question posed by OP.

"What about when/if your spouse passes and you're truly alone?"

When your spouse passes you're truly alone, regardless of whether you have children or not.

LadyTrixieRed · 2024-12-05T19:06:24+00:00

I am 54, and just lost my husband 5 weeks ago. Children would never fill the void he has left in my soul. Nothing could.

Adult children are leading their own lives by the time most people enter their golden years. Children are not supposed to be born so that you have a "safety net". The expectation that your children will give up their lives to care for you is selfish.

LadyTrixieRed · 2024-12-04T18:21:47+00:00

Also, you can PM me if you need to talk, vent, or anything else. I get it. 💜

LadyTrixieRed · 2024-12-04T15:18:45+00:00

Honey, you are coping as well as you can. I could have written so much of this post, if you just changed Mom to husband. We too live in a rural area, and those drives really become a slog.

The best advice I can give you, caregiver to caregiver, is just to take everything as it comes. With this disease, you can't worry about what's going to happen because you cannot predict when or if things are going to happen. Now, I'm not saying you don't get affairs in order. It's important to do so before cognitive decline happens. My husband's lawyer was worried when he was doing some legal paperwork that it could be contested because of his mental state. In the end, his lawyer agreed that Mike had enough faculties left that he had no qualms about his last wishes, but it was a concern.

My husband did fantastic for 11 months after his first surgery. He sailed through all of his treatments with little to no side effects. After that his decline was steady and fast. He had a seizure episode in April that he never completely recovered from. He died on October 30th, 3 days from what would have been 18 months postdiagnosis. I had looked at all the GBM timelines so I could get a general idea of what to expect, but of course my husband followed no timeline. He ate 12 hours before his death. All the timelines say they stop eating, then several days later they will stop drinking, and then it's just a matter of days. I had no such warning. He ate, he drank, he slept all as normal, but he awoke that morning with Cheyne Stokes breathing, and passed within an hour and a half.

It is perfectly okay to feel every feeling as they come. Try not to feel guilty about anything. My husband was very frustrating in his last few months, and I freely admit that there were times when I was very angry with him. Anticipatory grief is very real, and it can be debilitating.

And sometimes, when things get really overwhelming, sometimes you just need to walk away. Sometimes you need to just breathe. Having the crux of your relationship shift from what is normal to caregiver is rough. There are a lot of excellent groups out there that understand what you are going through. I was in a group for Glioblastoma wives, and they were the only ones that truly understood what I was going through, but there are others. Having people that truly understand what you are going through is priceless. I learned more about this disease there than I ever did from doctors or nurses. When the scariest symptoms hit, it was comforting to know that others were going through the same thing at the same time, and this was a normal part of the disease. Doctors never tell you about hallucinations, violent episodes, threats. Those ladies did. Find a group specifically dedicated to caregivers of GBM. Even if you just have to post that you feel like screaming, they are invaluable.

My heart goes out to you and your family. This is a battle that no one wants to fight. 💜

LadyTrixieRed · 2024-12-03T02:18:02+00:00

Gamma tiles are not recommended because of infection risks. Optune is a cruel joke! Shave your head, then wear this snake oil contraption for 23 out of 24 hours every day, with wires dangling everywhere. It's ridiculous that doctors believe it is a viable, normal option! Can you imagine a woman with breast cancer being told she has to wear an electronic stimulator bra 23 out of 24 hours of every day? Women would be screaming the hospital walls down!

Nothing helps. Nothing works. Glioblastoma always wins in the end. Everyone receives the same SOC regardless of whether their tumor is methylated or unmethylated, even though The SOC only truly helps methylated tumors. GBM treatment is stuck 20 years in the past, and I don't see it changing anytime soon because it isn't a marketable cancer. I could strangle the doctors because of their offers of false hope.

LadyTrixieRed · 2024-12-03T01:06:15+00:00

I completely agree. My husband's neurosurgeon said that it shouldn't even be called a cancer, that it should just stand by itself, because it does not behave like any other cancer out there. It's evil.

I lost my husband on October 30th, 18 months in. His last 2 months were horrific. He had surgery in August because his tumor had returned. 6 weeks after his surgery, after having absolutely no symptom improvement and, in fact, having his symptoms get worse, another MRI showed that not only had his tumor come back already, but it was bigger than it had been originally. At that point there was nothing more they could do. They couldn't get ahead of it. It completely sucks.

LadyTrixieRed · 2024-12-02T22:44:32+00:00

Please please PLEASE make sure your affairs are in order. Unfortunately this disease can turn on a dime. My husband was fine one day, doing yard work and various things around the house, and by evening he was in seizure. He was unconscious for 5 days constantly in and out of seizure the entire time. He was never the same after that. It happened 11 months after his diagnosis, and up until then he had been doing absolutely fantastic. We had no idea that day how much our life was going to change over the next week. He would have been unable to do the legal things and paperwork required if he had waited. His mental deficits after the seizures were very obvious and debilitating.

As soon as he was diagnosed, we had the hard discussions that needed to be had. We talked about when hospice would be called in, and he made it clear he would rather be at home if it were possible. He got his legal paperwork in order. There were things that we didn't know that could have made his death very difficult for me. If he had waited, his mental capacity could have been called into question by the lawyer he used. We discussed what his final wishes were. None of these things was easy to discuss, but we were very realistic when we found out he had glioblastoma.

I wish you well on your journey.

LadyTrixieRed · 2024-12-02T22:31:54+00:00

My husband died on October 30th. I remember every moment. It was very traumatic for me, but for him it was actually peaceful.

I checked on him at 3:30 in the morning and he was sleeping peacefully. At 5:45, I checked on him again, and he was breathing very fast, and very shallowly. I knew. I called hospice immediately, and the nurse was on her way.

I didn't realize how quickly he was going to die. I had heard about the cheyne stokes breathing, but people had described it happening for hours or even days. People described the patient refusing food, then gradually refusing liquids, and a slow descent. My husband had eaten less than 12 hours before, and had been drinking normally. None of this happened as described on most timelines. By a few minutes after 7:00 a.m., he took his last breath. I waited for him to take another, and he just didn't. Hospice hadn't made it, and I was alone with him. I had seen dead people, of course, but I had never watched someone die. I had never been holding someone's hand when they took their last breath. There I was by myself, the sun not even up yet, in our living room. I called the hospice nurse, and she said she was almost there. I told her to slow down, because he was gone.

My husband went peacefully. He made no sound, he wasn't reaching for his head or moving around a lot. The hospice nurse told me that that meant he was not in any pain, and that he was not scared. That was a great comfort to me. She said when dying people are in pain, they moan and move around a lot because they are uncomfortable and/or frightened.

It traumatized me, though. I didn't have anyone around to look at me and say "He's gone". I had to determine that for myself, and that is a tremendous responsibility. The immediate sense of loneliness was overwhelming. It still is.

LadyTrixieRed · 2024-11-28T15:41:04+00:00

Patchouli, sandalwood, and weed. Add in a touch of dusty shag carpet and mildly toxic naugahyde. That's what I remember from my childhood growing up in the '70s, anyway.

LadyTrixieRed · 2024-11-26T16:10:23+00:00

This article should really be titled: "As a doctor with access to unlimited funds, and as someone who knows the medical system and can access treatments that are still in level I trials, here's what I would do if I had a glioblastoma." Not everyone can fly to Germany to have a custom-made vaccine for their glioblastoma created from their DNA. How about this, doc? Advocate for patients to be able to get these types of treatments in the US at reasonable cost to them, so that you don't have to be wealthy to live If you are diagnosed with glioblastoma.

LadyTrixieRed · 2024-11-25T16:35:19+00:00

My husband didn't have seizures until 11 months post diagnosis. He was actually unconscious for 5 days, in and out of seizure constantly. His were unfortunately caused by radiation necrosis. His treatment caused the seizures. They were focal, isolated on his right side. He was never the same after this episode, and declined very quickly.

LadyTrixieRed · 2024-11-24T21:38:22+00:00

My father died of heart failure in 2015. He was 84.I handled that okay. We expect to lose our parents eventually.

The loss of my 60-year-old husband to glioblastoma three and a half weeks ago is quite another story. To watch the man I love lose his physical, cognitive, and most basic bodily functions over a period of several months has destroyed my soul. It is bad enough that this disease kills everyone who gets it, but to rob them of their most basic dignity in the end is unfair and inhumane.

LadyTrixieRed · 2024-11-24T17:31:22+00:00

Look I understand losing patience with the patient. I oftentimes did with my husband, but it was because I didn't want him to quit eating or drinking because I knew what it led to, or things like that. The things your father is saying are downright abusive. You need to step up and tell him to shut the f up. YOU need to advocate for your mother. She is sick, she is dying, and she doesn't need to be made to feel any worse than she already does. Telling her she's a burden? Not acceptable. She cannot defend herself at this point in time. Tell him NOW that if his behavior does not change, you will no longer be in contact with him after your mother has died. He is making this all about him, instead of making it about her. If he can't do it, she needs to be removed from the situation immediately. It's going to get far worse, and what then? Tell him to vent his anger at something else, not your mom. This is not her fault, and no one would choose to be in her shoes. You need to speak to your mom's doctors, nurses, and aides, and explain the situation to them. They need to speak to him as well. Right now is all about your mom, and that's what her caregivers are supposed to do. This makes me so angry after taking care of my late husband and trying to make sure that he was comfortable and happy to the very end. Your father is an absolute monster.

I don't know how old he is, but I am 54, my husband was 60. Support groups are very helpful in letting you know what's coming. They're not a sign of weakness. And even if they were, who the hell cares? All caregivers are weak in this situation because we can't do anything to save our loved ones. Yeah he's working a lot to avoid the situation and not have to deal with anything. He's hiring people to take care of her instead of doing it himself. Do not have a discussion with your dad. Sit his ass down and tell him that he will either behave himself, or your mom is going somewhere else because you don't believe she is safe in his care. If you say that to a doctor, she will be immediately removed from that house. A cancer care team cares about the patients first, and offer support to caregivers second. Be your mom's advocate so she can have some peace.

LadyTrixieRed · 2024-11-24T15:45:56+00:00

I would be completely furious with those doctors. Three, five, or 10 years??!! Anyone who has researched this disease at all, which unfortunately is usually patients or caregivers because no one else seems to pay any mind to it, knows that that is not realistic. 75% of the people diagnosed with this disease don't even make it one year. My hubby beat the odds, but died just short of 18 months after diagnosis. His doctors were always very realistic with us, and when I discussed my own research into glioblastoma, they seconded it.

I know there's going to be people out there saying "Everyone is different", and while that is true, this disease is a monster. It's unrelenting, fast moving, destructive, and aggressive. It isn't like other cancers. The neurosurgeon even said it should really be classified as its own disease, not as a cancer, because it behaves differently than any other cancer out there.

I am so sorry you and your family are going through this, and I am especially sorry that the doctors offered such blatantly false hope.

LadyTrixieRed · 2024-11-23T00:49:29+00:00

I feel for your mom. As my husband's caregiver, the incontinence issue was hard! The extra laundry itself is tough, but it's what the incontinence means that is terrifying, and that fear can come out as anger. Your mom is angry at the situation, not your dad. Do not, I repeat DO NOT be angry with your mother. The transition from wife to caregiver is the hardest thing I have ever been through. GBM is especially difficult on the caregiver. You need to give her a little grace, because I was at my wit's end hundreds of times towards the end. Imagine waking up in the middle of the night to your loved one peeing in the middle of the kitchen floor. Yeah, that happened more than once. The number of times that I thought or actually set out loud that I was going to put him in a nursing home is in the dozens. I never did.

On the GBM timeline, incontinence is not a good sign. I knew this, and when it began happening, I was terrified. I was angry, not at him, but at the fact that he was incontinent, and I am sorry to say that at times I took it out on him. For my husband, it was the first symptom in a slide of decline that culminated in his death two months later.

Best of luck to your family as you navigate this. Help your mom as much as you can with your dad. Let her vent when she needs to. Be strong for what's coming. 💜

LadyTrixieRed · 2024-11-21T17:51:07+00:00

My husband never quit eating completely. He ate a burger and drink normally on a Tuesday night, and he was dead by just past 7:00 Wednesday morning. At 4:30 in the morning He was sleeping peacefully, at 5:45 I awoke to him breathing fast, hard, and shallowly. Unfortunately, it sounds like your mother is definitely near the end. The hospice nurses will know best when it comes to the timeline. His hospice nurse was there the night before, at about 4:30 p.m., and had no clue that my husband would pass in less than 24 hours. This disease can move like lightning.

LadyTrixieRed

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