mother has cancer and I have so many questions
June 28, 2014 1:10 PM Subscribe
My Mother is likely going to receive a Metastatic Lung Cancer diagnosis on Monday. Due to her health, she probably won't be able to receive treatment. Questions about seeing an oncologist, palliative care, hospice, and my options.
posted by royalsong to Health & Fitness (26 answers total) 6 users marked this as a favorite
I'm sorry, this is long. I'm trying to include as many details as possible.
My Mother went to the hospital on Tuesday with what she thought was constipation or bowel obstruction. The ER discovered that the cause of her pain and discomfort is from pancreatitis. They admitted her to the hospital. An ultrasound of her pancreas showed an abnormality with her liver. A CT scan of her chest and abdomen revealed a mass in her lungs and enlarged lymph nodes all over her abdomen. Some of those lymph nodes are pressing against her pancreas, causing the pancreatitis. They took biopsies on Thursday. The doctor tells me that he doesn't expect results until Monday. He also told me that from his experience, this is presenting like text book lung cancer. The only question is what type.
My mother's health hasn't been great for the majority of my life. She suffers from a number of ailments, but the big two are diminished kidney function and diabetes. Prior to the hospitalization, she had a surgery planned for this Friday to put in a vascular access in her arm for dialysis in the future. She is also moderately disabled, unable to walk or stand for longer then a minute or two at a time. I have lived with her for years as her caretaker, cleaning and providing meals and driving her to doctors appointments.
My sister and the doctors seem to be working under the assumption that if this is cancer, it is probably too far advanced and her health in too poor a state to treat. That treatment might make her feel worse and make the end of her life miserable.
I have a lot of questions. The doctor told me that to even find out if fighting the cancer is possible that she will have to be able to leave the hospital and walk into a cancer clinic and see an oncologist. Does this seem normal? She's at the biggest university hospital in my state. They have a huge cancer center. Are they not able to have an oncologist come see her?
That's if she can even leave the hospital. She is in moderate to severe pain unless she's given strong pain killers. She complains of being very weak and needs a nurse to help her to and from the toilet. She's barely eating anything. Right now the doctors are just providing palliative care for the pain from the pancreatitis. When I asked the doctor what needs to happen for her to be able to go home, he seemed a little flustered.. like there isn't a clear point for that right now. So if the hospital oncologists can't or won't see her, and she can't leave the hospital to go see one, does that mean we're just throwing up our hands and ignoring even getting an oncologist's opinion?
The doctor told me that medicare will cover all costs of hospice care except room and board. Doing research on the internet suggests that a family member who lives at home would be the primary care giver for at home hospice. I.. I don't know if I can do that. My job is part time, I have no leave or vacation time I can use to take care of her. I am sure I could apply for FMLA, but the problem is that I have substantial debt, both student loans and credit card debt. My Mother and I live a very codependent relationship. Our combined income allows us to pay all of our bills, but we need both of our incomes in order to do it. I can't afford to take unpaid FMLA leave. I can't be at home all the time to take care of her, I have to work. What are our options? I tried to google what options a person has if they don't have a family member who can care for them. Unfortunately a lot of the results on the web about hospice care is the same regurgitated information. Who do I talk to about all this? Is there a person at the hospital who can help me navigate this or who I can direct questions to? Would this be her hospital social worker?
My sister is already full time caregiver of her spouse, and won't be able to care for our mother. I feel very lost. Despite the tone of this post, I am having a very difficult time dealing with this. I have been attached to my mother's hip my entire life. Going to visit her in the hospital is rough. She seems under the assumption that I will be able to take care of her. I feel horrible and selfish that while I do want to care for her.. that I don't want the responsibility of wiping her butt after she goes to the bathroom. I feel bad that I have to focus on my future and my financial stability instead of caring for her. I feel like a horrible daughter. I feel like I can't be the daughter she deserves. Prior to this, I was already heading down a dark path toward reoccurrence of depression. I should probably talk to someone, but I don't know if I have the energy to take care of myself while all my thoughts circle trying to worry about caring for her. Who can I talk to who can help me?