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My sister and I found out my mom had stage 4 lung cancer by accident. They had no intention of telling us. I am not sure how long they thought they could do this. They (but mostly my dad) have refused most aid:


No to outside help, even for shopping,


No to medical alert,


No to wheelchair,


No to walker,


No to shower chair.


We finally got dad to agree to the shower chair after he got my mom in the tub and couldn't get her out and he is almost accepting of getting her a walker.


He is not in the best of health either and my mom's cancer has spread to her bones. I don't think she will make it to the end of the year and am really paranoid when hospice is suggested he says no.

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You could make a vulnerable adult report if you feel like their safety is at risk.
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Jen, how are things going?
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JenTX74 Oct 2020
My mom is doing well, but getting them to communicate important information to the dr is the new challenge. Every time I talk to them I email my sister and relay everything they said and how I thought she sounded - my sister then compiles a list of information to share with the dr. We have figured out that the wording of the question we ask them is essential. For example you cannot ask my mom if there is pain - she just says she's fine, you have to be specific, we finally got it out of her that her back no longer hurt but she still had some pain in her ribs. It's frustrating. We are still working out her medications but I think that will be an ongoing issue. Thank you for asking
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Sounds like they are functioning above your assessment. They are going to do what they want. The pressure to "change or do" when you "can" will continue while they are able. You can not intervein until they are a "danger to themselves or others". You need some one to help you see and do to take care of your mental health. When the cancer is affecting her abilities she will "give up". You will always be there to love and give them your presence.
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Thank you everyone for your responses - I had a great call with my sister who relieved a lot of my anxiety. I was trying not to burden her too much with more worrying but she said to stop and just let her know. My aunt, who is a nurse, is there now for a few days. We are getting the medications on track, and her chemo is working well. We think down the road my dad will accept more help as he will be more tired of all he is doing and not be able to keep it up. ( we already ordered a wheelchair and a walker for her) .
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Imho, you should get Power of Attorney. Also, speak to her oncologist.
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This is exactly what I experienced with my parents. They were incredibly independent (but co-dependent). They refused my help. I often didn't know if one was in the hospital, but if I couldn't reach them by phone, I soon learned to call the hospital and enquire. Yes. That independent. They also were motivated to not create worry or work for me. So, some of it was not to be a burden to me. Eventually, something will prove to be the catalyst for change and an acceptance to outside help, whether it was me or a professional caregiver. It was a crisis that forced them to adjust, but still with much coaxing from me. My advice is to respect their wishes as much as possible, but for you to be ready to spring into action. It sounds like that's what you are doing. As much as outside intervention is not their immediate desire, they will come around to see the benefits. Hospice is a completely different thing that requires giving up the idea of receiving treatment for the disease. That is a lot to accept. I would keep working on the things you listed. If you can get a caregiver in to help a little, it might be easier to transition to hospice.
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First of all, get a Power of Attorney at once so you can make decisions. Second, get in touch with the doctor and the social workers for help. Both are ill and need help.
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Hospice can also advise and help provide equipment that will make your mother more comfortable. For example, my mother has a hospital bed and mattress that gently massages her so that she won't get bed sores. Hospice can get aides to come in to help. I know people who hate the word "hospice" because they don't want to think about their LO passing away, and they don't like equipment that indicates disability (like walkers). Try to convince your father that this will make things easier for your mother.
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Can you get them to see their doctor on some pretense, and let the doc know in advance of the visit what the situation is like as you have here? The doc can’t talk to you due to HIPPA but you can write to him outlining your concerns. You have powdered butt syndrome (once someone has powdered your butt they think of you as a child and don’t appreciate your advice) to your parents, but their doctor may be seen with more authority and respect for his/her guidance and advice. Suggesting hospice and other help needs to come from the doctor, it recently did for my dad or I don’t think it would have happened.
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I faced a similar situation as yours when my father began to decline with cancer and help was needed to do the cooking since that was his role. My mother had dimentia and would not let anyone in the house to cook breakfast and dinner. I had a heartfelt conversation with my mother who refused help for my father who Really needed it. I told her that every person has a right to healthcare and that she had no right to interfere. Sounds like tough love right? Fortunately she listened and agreed. Shortly thereafter, My father went into remissIon and my mother ended up on hospice for the dimentia. Hang in there!
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Tell your dad that your mother needs hospice. Your mother will be in great pain and probably already is. The pain of your mother is what you need to stress to your father, ask him if he wants her to be in pain. They will provide medicines to prevent the pain and he will be in charge of giving them to her. I’m sure he doesn’t want her in pain. Try that tactic with him.
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My father currently has Hospice care. Everyone I have ever spoken to says they have the most wonderful and caring staff of any place they have ever seen and that is definitely also my experience. Another thing is they bill Medicare and everything they do (other than housing and food) is paid for. If your parent needs any medical equipment, its paid for, drugs your insurance doesn't cover is paid for etc etc. I am not sure what your parents financial status is but the fact that so much is covered is so helpful.
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they are independent and rely on each other..i personally think that is great even though it will probably effect the health of the "caretaker" but better your dad than your mom being one..it hurts to watch but it is their decision..just be supportive and let them know you love them
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Both my parent have their faculties, my mom is getting chemo and has pain medication. But they are both really stubborn. She has only had 1 treatment, the 2nd is next week, but my sister and I know she is not going to get better. I think my dad just refuses to accept she is going to die. I am hoping over the course of her treatments he will come to accept what is going on and will accept more help. My anxiety is also bad as I am halfway across the country from them, my sister is helping them a lot and she know the minute she asks I'll fly back. Thank you for your response.
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AlvaDeer Sep 2020
Jen you are so fortunate in having a loving sister, and she in knowing you can come to her when you must. I think your view, with spread to the bones, is very realistic, and I think you are smart as a whip in recognizing that almost certainly you Dad is blinding by denial, and by what he cannot face. I am so relieved that there is pain control. You are correct that the chemo is unlikely to help, but it just MAY and I have seen some things lately in cancer care that do prolong and help, and even lessen pain. It is a day at a time, and I am so sorry for you both, but stand in full salute at your supportive care of one another, and your loving understanding (if mixed with a bit of frustration) for your Dad. Hope you will keep us "posted" as you make this tough journey with your Mom and Dad.
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An important step would be to work on convincing them to assign you and/or sibling as durable PoA, if you aren't already. I'm not sure if your dad is just worried about "being a burden" or if he is terrified about decline/losing independence etc? If at all possible (and I understand you don't live in the same state) an in-person discussion about getting PoA in place in a calm moment and maybe meet separately with each parent so they can be candid. Maybe just one-on-one so he doesn't feel "forced". Bring the papers with you in case you can convince them to get it done. Appeal to your dad about "what if" something happened to him, then where does that leave your mom? Please help him to understand that without a PoA an individual who becomes incapable of making decisions in their best interests risk becoming a ward of the county. Maybe he doesn't understand that his children don't get to just start managing their affairs without the proper legal structure in place? Just trying to give you a script to work off of. With my own mother I had to get her to actually admit that no one gets to live forever and that when she "gets bad" to just "take her out back and shoot her" or "put her on an ice floe and send her off". Yes, sadly this was how that discussion went for many years until she was a first-hand witness to the caregiving debacle my in-laws created for us because they refused to plan for anything and had no money yet thought we'd step in to "fix" everything. All you can do is make your case as best you can. Your dad needs to know that if his children need to pursue guardianship it will be very costly in both time and money. If the county has guardianship, then they make all the decisions. All. I wish you success in helping them!
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Do you have POA?
I would say that worst come to worst, because uncontrolled bone pain IS the worst, your Mom should be transported to hospital by ambulance, and there you will need to work with Social Services and your Dad to iron out care options and plans. It may in fact be a Social Worker who ultimately calls you suggesting emergency temporary guardianship and in facility hospice. You cannot allow unaddressed suffering to go on.
Meanwhile you do not tell us that either of your parents are incompetent in their own decisions. If you take Mom to appointment or anywhere else, check with her that she is OK with what is happening. If not, it is straight to an attorney and POA being assigned to one of you with the second sister being an alternate. I am so sorry. There is honestly NOTHING worse than fear of unaddressed physical suffering in one you love. I hope you will update us and wish you the very best.
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