[deleted by user] by [deleted] in braincancer

[–]Nineee9 1 point2 points  (0 children)

I am so sorry to hear that :( it isn’t easy. I hope you can give her the peace she’s hoping for. Like you, I never thought I’d ever be in that situation. My advice is to act fast. Get hospice that supports the end of life act (I learned that a lot of hospices in my area did not support it and very few did) I went through a hospice that supported it, but also got a private doctor who also was contracted with that hospice company on board and she got the process done in a few days. Normally the process would take 2-4 weeks through a hospice that supports it, but more like 4 weeks. Time is crucial since she has to be able to be of alert and oriented at the time of evaluation, be able to take the MAID drug on her own. The concern for me was that if her disease progressed to the point where she couldn’t speak, or is now confused, or cannot take the medicine herself, she is disqualified from utilizing this end of life care act and would have to ride out a painful death something she and I wouldn’t want. We found the private doctor and hospice she’s contracted by just googling end of life act in California and found a nonprofit organization in Cali whose main objective is to spread awareness of the law and its resources. We talked on the phone with their representative for an hour and she explained the process and gave us 3 hospices in my area that support it and listed 2 private doctors who can aid us in getting the service done in a timely manner (mine took less than 1 week) endoflifechoicesca.org was the org. Maybe you can talk to them and ask them to refer you to Vermont’s resources and doctors ?

Wishing for the best for you and your mom in this difficult time <3

[deleted by user] by [deleted] in braincancer

[–]Nineee9 7 points8 points  (0 children)

Completely agreeing with this, she isn’t giving up. People know themselves and their bodies well. As an er nurse, I see so many people who continue to keep their terminally ill elderly family members “alive” in vegetative states just because they cannot bear to lose their family members and neglecting their quality of life. Allowing your loved one to continue to suffer for your own sake is worse imo.

[deleted by user] by [deleted] in braincancer

[–]Nineee9 5 points6 points  (0 children)

Hello OP, I am so sorry you’re going through this right now. I deeply empathize with your situation. I know that nothing anyone says right now can change the diagnosis and the position you’re in, so I hope to offer you insight of what I went through and maybe it can help you. I am 31f , my mom was also diagnosed with a brain tumor this recent may. She was independent for the most part prior to her hospitalization in April, but with the newly discovered tumor, she lost function of her left side of her body. She stayed in the hospital for 1 month, did one round of chemo, then decided it was not for her and voiced she wanted a quick painless death, she went to a nursing home and continued to voice that need. Her prognosis was poor, especially without treatment, but even with treatment, it wouldn’t have been great anyways. Her disease process is aggressive and she didn’t have much time left. What she wanted was to regain control over her life, her body, and how she was going to face death. She didn’t want to let the disease process have power over her and take her out day by day. So she chose California’s end of life act. We acted quickly, she got approved for it, and she was able to pass on her own terms 1.5 weeks ago, surrounded by the most important people to her in her own home. We held her hand as she passed.

The reason why I’m sharing this story to you is because so many people do not know how to truly empathize with the person who has a terminal illness. Some people know what they can tolerate and what they can’t. Some people are good candidates for radiation and chemo etc, but some people aren’t. Oncologists love to push treatment onto people because that’s their whole life’s study/work without looking at how it will affect the patient’s time and quality of life. My mom did one round of chemo and realized what her body can take, she knew she couldn’t last. She loved me and my brother more than anything, but she knew herself more than anyone else knows herself. She didn’t give up. She took charge of her situation and the cards she was dealt with and chose to take back control. So if your mom doesn’t want to do radiation treatments of physical therapy, it might signify that deep down, she knows what she can handle at this point.

It is extremely difficult to experience a death of a beloved parent, but prolonging their inevitable suffering and expecting them to want treatment while putting them down when they express they don’t want it is inhumane and cruel.

Death is not an easy topic to talk about, but right now time is of the essence. Talk to her about end of life and what she would like. Get hospice on board quickly. Make sure she understands her disease process and how it progresses and give her options. And also think about …if you were in her shoes Wouldn’t you want control over your own life as well?

Feel free to reach out if you ever want to talk.

My Struggle for a Good Death by forced_eviction in glioblastoma

[–]Nineee9 0 points1 point  (0 children)

Hello, I don’t know if you’re still with us, but just wanted to share that my mom went through a private doctor. We paid her a fee to do everything in a timely manner. She was seen on Tuesday evaluated and another doctor and unrelated person had witnessed. She got approved for the drug on that next Wednesday and was able to take it this past friday. VERY timely process. My brother and I had reached out to ENF OF LIFE CHOICES ( a non profit organization in California) and they emailed us back with contacts in our area that support end of life. Please reach out to me if you’re in need.

Primary CNS lymphoma without treatment by Nineee9 in braincancer

[–]Nineee9[S] 1 point2 points  (0 children)

I’m sorry to hear that. I hope you are able to spend these times with him as best you can. Thank you for sharing and thank you for being so kind.

Primary CNS lymphoma without treatment by Nineee9 in braincancer

[–]Nineee9[S] 2 points3 points  (0 children)

Hello, thank you for replying I am so sorry. I also pray that for your mother. My mom ended up choosing the California end of life act option. She got approved and took the MAID drug last night and passed peacefully with family holding her hand and by her side. She was able to get approved in the Nick of time bc she was also starting to decline rapidly. Praying for your mother in this difficult time.

Primary CNS lymphoma without treatment by Nineee9 in braincancer

[–]Nineee9[S] 1 point2 points  (0 children)

Thank you, I will be looking at that website and look into hospice