Hi everyone. I have just been through the most stressful period in my life. I am looking for support and a place to decompress.
I talked to my mom last November, shortly before Thanksgiving. She lives in New Mexico. I'm in Minnesota. She told me they found a large mass in her liver. As sad as it was, I was waiting for something like this to happen. She had been a smoker since age 14 - now 82 years old. She said she was going for a biopsy and would get the results within a week or so. Two weeks later, I still hadn't heard anything from her. She wasn't taking my calls.
The Saturday after Thanksgiving, her boyfriend called me, frantic. She had fallen two days prior and couldn't walk. She wouldn't allow him to call the doctor. He told me she was diagnosed with lung cancer with metastasis to the brain, bone, and liver. I knew it was a grave diagnosis at her age. I got the doctor's name and called him myself. He had her transported to the hospital.
I called the hospital to make sure they had my name, her living will, and her health care power of attorney paperwork. They told me she had broken her hip. With as much cancer as she had in her body, I asked if surgery was appropriate. I, also, asked about the possibility of hospice. My mom's living will clearly stated she did not want treatment if she had a terminal illness. Her doctor told me, "You don't want that ma'am! We'll talk after she has surgery."
After her surgery, my brother came to visit her. I gave him a list of questions to ask the doctor. What would her treatment be? What kind of side effects would she have? What is her prognosis? Is she able to make her own decisions as she's on heavy duty pain meds and has brain metastasis? The doctor would not call me back. He went so far as to run from the room when my brother had me on the phone. He told my mom and her boyfriend that all she needed to do was take one small pill with very little side effects. She had a 60 percent chance of being completely cured! Her boyfriend latched onto that as the "magic pill" that would make everything go away.
After a week in the hospital, she was transferred to a rehab center for light rehab. She stayed there for about a week. In the meantime, I contacted the American Cancer Society to see if there was new research I was missing that made this diagnosis less daunting. They informed me that it could be managed but not cured. They also gave me a list of advocates in the New Mexico area.
I talked to my mom. She was extremely angry with me for not coming down there. My husband and I are in our 5th year of bankruptcy. We have no extra money. No credit cards. Nothing. She couldn't afford to fly me down either. I told her I can't afford it. She accused me of being selfish and hung up on me. She no longer would take my calls.
My mom was saying to both me and my brother that she just wanted to die. The doctor came back with "you don't mean that honey" every time she told him that. He was basically forcing her to go the chemo/radiation route. He said he didn't have to follow her living will because she wasn't terminal. He was going to cure her. I'm frantic by now. I can't get mom to call me. I can't get the doctor to call me.
She was sent home from rehab after about a week. No oxygen. No 24 hour nursing care. Just a nurse who would pop in and check on her once a day. So, I called the home care agency. They called me back and said they were monitoring her over the weekend to see if she needs oxygen. Her boyfriend, again, called me frantic. She can't breathe and she's hallucinating. I tell him to call 911. He says I'll call in the morning. I call the home care agency who goes to check on her. Her saturations were 74 percent and dropping when she was sleeping. They admitted her again.
I still haven't been able to talk to any doctor. The nurses would give me what information they had but no doctor would call me back. I was her heath care power of attorney. there was no reason why they couldn't talk to me. I got ahold of an advocate in New Mexico who told me her doctor absolutely refused to place anyone on hospice. Everyone gets chemo and radiation. I call mom's insurance company and end up talking to the medical director. He tells me there is nothing he can do.
My mom is telling the doctors that she wants the "magic pill" but no one is really telling her what this fight is going to look like. I finally found an angel of a nurse who told her straight up what treatment would be like. If she wanted that, he would arrange it for her. If she didn't, she needed to tell the doctor's that and refuse care. She finally said, yes I want hospice.
Hospice came and evaluated her. She was admitted to them the next day. She was finally being treated appropriately and could sleep peacefully. I called her but she still refused to talk to me. Three days later she died.
Her boyfriend refuses to tell me where she's buried. or even if she's buried. He is telling everyone I killed her. Not only do I have to deal with the death of my mother, I have to be demonized for caring for her. I am so angry and hurt at this point in time that I don't know how to feel. Sorry this is so long... It was a long, drawn out drama. I hope she knows I helped her out of love as best as I could despite not being able to be there personally. thanks for listening!
Patti
