How to talk to my mom with Mets?

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1Teresa
1Teresa Member Posts: 67
edited March 2014 in Breast Cancer #1
it is a long story, but I am and have been my moms caregiver for 1 1/2 years. Mom got diagnosed with something recently (Im pretty sure the breast cancer is back and has mets) but she put the confidentiality thing into effect and wont let her doctor talk to me, yet she wants me to get everything out of her name NOW and all kinds of stuff. I cant take care of her or anything if I cant talk to her doctor. And her mind hasnt been quite right lately either where she forgets things she should not, she even cancelled 2 doctor appointments and didnt know why, she has hallucinated, etc. but mostly her mind is there. I think she has 3 or 4 broken ribs too because of things the doctor did say and her obvious pain, but mom doesnt remember him saying. Also she did finally tell me that the doctor said she has colon cancer, but with her mind playing tricks I dont know..... The nurse told me all the imaging came out negative, yet her signs of cancer are absolutely without a doubt there. She says she doesnt want me to know because I need to get on with my life and do things for myself now..... she thinks she is protecting me, but it is killing me and God has put a very strong thing in me to take care of her even to the end.

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  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
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    I am so sorry for what you
    I am so sorry for what you are going through. Remember that, even though her doctor can't talk to you, you can still talk to her doctor. It is not a HIPPA violation for family members to share their concerns, in fact, it is often welcome. Ventilate with her docs whenever you want.

    You are in a difficult place and, I know, because I am currently going through a similar situation with Danny's mom. She doesn't have cancer, but she has a seizure disorder and probably dementia. And she is very combative and hostile to everyone. She changes doctors frequently. She is in the hospital now because she took both her am and pm pills at the same time and begin vomiting. She also had a huge bruise on her cheek and a swollen ankle, but no idea what happened.

    You are in my thoughts and prayers because I truly know how difficult this can be.
  • fauxma
    fauxma Member Posts: 3,577 Member
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    If your mom is saying and
    If your mom is saying and doing things that indicate her mind is being affected you need to call her doctors and then find out about getting a power of attorney. Not sure if that will get you the information from the doctor but I think it will. If she has mets they sound like they are in her brain and her ribs. Her doctor needs to be aware that she is cancelling these appointments and not remembering and not remembering what he has discussed with her and the hallucinating. When my mom's cancer was found in her brain from an unknown primary it also began affecting her mentality. Couldn't remember the year, the president or other things. The other thing you can do is take her to the appointments and wait outside and take her home. It really sounds like she needs someone to be with her now. I am so sorry that this is occuring and will keep you both in my prayers.
    Others here will chime in and hopefully they will have other suggestions and ideas for your to persue.
    Stef
  • sal314
    sal314 Member Posts: 599 Member
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    So, So Sorry
    about what you're going through. Since she has mets, it wouldn't surprise me if the cancer has gone to her brain. That happens quite often with BC mets. That would explain her behavior.

    I would talk to her doctor's again. Since you've been the main caregiver, they should tell you at least the "basic" condition and prognoses. The hospital should also have names and resources of who to talk to about your situation, whether it's talking to an attorney or advocate person. I'm sure there are ways to get the right to privacy changed so you can be in the loop as to her medical condition.

    Is there anyway you can just have a heart to heart with your mom when she's in a more "with it" state? Tell her how you're feeling. Let her know that you understand she is trying to protect you, but it's not, it's hurting you and it's not giving you the opportunity to care for her the way you would like to.

    It's an extremely hard situation. And at the very least, I would think her doctor's would tell you it's time for hospice care. If and when that becomes the case, then you just have to love her and care for her the best you can. Hospice nurses are wonderful. They will guide you and be there with you every step of the way. They will tell you what you need to do and what to expect as her condition changes.

    I'll be praying for you and your mother!

    Blessings,

    Sally
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
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    will she sign release
    I carried one for years in purse (release signed by my mother)& just took it out and showed the Drs/hospital/ER staff etc..(it was notarized)IF I did not have that I couldnt' even make or confirm her appts. (she did not have cancer-other illness)
  • 1Teresa
    1Teresa Member Posts: 67
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    will she sign release
    I carried one for years in purse (release signed by my mother)& just took it out and showed the Drs/hospital/ER staff etc..(it was notarized)IF I did not have that I couldnt' even make or confirm her appts. (she did not have cancer-other illness)

    she is in the hospital
    She is in the hospital, I took her to the ER a few nights ago. By the time I took her she had already agreed I could be in charge of her medical because she knew things were really bad and had cancelled the dr appts (but it was only verbal). She went from having 3 good quality of life months to deterating rapidly begining in early October. By the night of Dec 1 she was in the ER (fortunately she had an MRI and xrays schedualed earlier that day). When in the ER they diagnosed her with mets to the bones and 3 or 4 broken ribs. And I dont understand that the nurse told me her ct scan, bone scan, mamogram all came out negative after she was in.... of course this was the same day that she told her dr not to talk to me because "I needed to get on with my life"

    Last year when she was in she developed a real bad colon infection and had part of it removed. Now she did say in a "fit of furry" that she has colon cancer and her dr is conferring with her surgeon about what to do about it.... she is 72 and otherwise very healthy.

    They have been giving her blood transfusions in the hospital and other bags in her IV. Her calcium level was 14 when I took her in and they gave her meds and dropped it to 9.2. This is all I know cuz as soon as she got feeling a little better, she told the dr he couldnt talk to me...

    As for her signing a release... I might be able to trick her because she wants to do a Power of Attorney for her business stuff and one of the things is finishing off on a hospital stay claim where I need to get some hospital stuff from the last time she was in.....
  • jnl
    jnl Member Posts: 3,869 Member
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    fauxma said:

    If your mom is saying and
    If your mom is saying and doing things that indicate her mind is being affected you need to call her doctors and then find out about getting a power of attorney. Not sure if that will get you the information from the doctor but I think it will. If she has mets they sound like they are in her brain and her ribs. Her doctor needs to be aware that she is cancelling these appointments and not remembering and not remembering what he has discussed with her and the hallucinating. When my mom's cancer was found in her brain from an unknown primary it also began affecting her mentality. Couldn't remember the year, the president or other things. The other thing you can do is take her to the appointments and wait outside and take her home. It really sounds like she needs someone to be with her now. I am so sorry that this is occuring and will keep you both in my prayers.
    Others here will chime in and hopefully they will have other suggestions and ideas for your to persue.
    Stef

    I am so sorry about your
    I am so sorry about your Mom, and, so sorry for all of the confusion and pain that you are going through now.

    You will need a power of attorney and not sure what else to get the doctors to give you all of her medical information. Call an attorney. They might not charge anything, or, do you have a legal aid office there? Or, call the American Cancer Society. I bet they can help you out.

    Good luck and I am sending you hugs,


    Leeza
  • 1Teresa
    1Teresa Member Posts: 67
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    1Teresa said:

    she is in the hospital
    She is in the hospital, I took her to the ER a few nights ago. By the time I took her she had already agreed I could be in charge of her medical because she knew things were really bad and had cancelled the dr appts (but it was only verbal). She went from having 3 good quality of life months to deterating rapidly begining in early October. By the night of Dec 1 she was in the ER (fortunately she had an MRI and xrays schedualed earlier that day). When in the ER they diagnosed her with mets to the bones and 3 or 4 broken ribs. And I dont understand that the nurse told me her ct scan, bone scan, mamogram all came out negative after she was in.... of course this was the same day that she told her dr not to talk to me because "I needed to get on with my life"

    Last year when she was in she developed a real bad colon infection and had part of it removed. Now she did say in a "fit of furry" that she has colon cancer and her dr is conferring with her surgeon about what to do about it.... she is 72 and otherwise very healthy.

    They have been giving her blood transfusions in the hospital and other bags in her IV. Her calcium level was 14 when I took her in and they gave her meds and dropped it to 9.2. This is all I know cuz as soon as she got feeling a little better, she told the dr he couldnt talk to me...

    As for her signing a release... I might be able to trick her because she wants to do a Power of Attorney for her business stuff and one of the things is finishing off on a hospital stay claim where I need to get some hospital stuff from the last time she was in.....

    done
    yesterday the dr was talking to mom about her bone cancer (yes she does have it) and doing a colonoscopy. Mom said she knew then that she couldnt handle her medical and that she had made a huge mistake. She signed over all her medical decisions to me and power of attorney. Apparently they cannot find the mass (the source of the cancer) and that was what the "negative" on her images was about. Mom said she wanted to "save me" from crying.
  • Kylez
    Kylez Member Posts: 3,761 Member
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    sal314 said:

    So, So Sorry
    about what you're going through. Since she has mets, it wouldn't surprise me if the cancer has gone to her brain. That happens quite often with BC mets. That would explain her behavior.

    I would talk to her doctor's again. Since you've been the main caregiver, they should tell you at least the "basic" condition and prognoses. The hospital should also have names and resources of who to talk to about your situation, whether it's talking to an attorney or advocate person. I'm sure there are ways to get the right to privacy changed so you can be in the loop as to her medical condition.

    Is there anyway you can just have a heart to heart with your mom when she's in a more "with it" state? Tell her how you're feeling. Let her know that you understand she is trying to protect you, but it's not, it's hurting you and it's not giving you the opportunity to care for her the way you would like to.

    It's an extremely hard situation. And at the very least, I would think her doctor's would tell you it's time for hospice care. If and when that becomes the case, then you just have to love her and care for her the best you can. Hospice nurses are wonderful. They will guide you and be there with you every step of the way. They will tell you what you need to do and what to expect as her condition changes.

    I'll be praying for you and your mother!

    Blessings,

    Sally

    I am so sorry your Mom has
    I am so sorry your Mom has mets. I can't imagine what you are going through. Please know that I will be praying for her.


    Hugs, Kylez
  • Mama G
    Mama G Member Posts: 762
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    1Teresa said:

    done
    yesterday the dr was talking to mom about her bone cancer (yes she does have it) and doing a colonoscopy. Mom said she knew then that she couldnt handle her medical and that she had made a huge mistake. She signed over all her medical decisions to me and power of attorney. Apparently they cannot find the mass (the source of the cancer) and that was what the "negative" on her images was about. Mom said she wanted to "save me" from crying.

    I can't believer they can't find the "mass"
    The source of the cancer.... so weird. I hope it all goes well. I will be praying for both of you.
  • Alexis F
    Alexis F Member Posts: 3,598
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    Mama G said:

    I can't believer they can't find the "mass"
    The source of the cancer.... so weird. I hope it all goes well. I will be praying for both of you.

    I am praying for you and
    I am praying for you and your Mom. I am like Mama G, I can't understand why they can't find the mass.

    Hugs to you!
  • 1Teresa
    1Teresa Member Posts: 67
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    Alexis F said:

    I am praying for you and
    I am praying for you and your Mom. I am like Mama G, I can't understand why they can't find the mass.

    Hugs to you!

    I dont know
    They did an xray, 2 mris, a bone scan, a ct scan and a mamogram..... they want to do a colonoscopy but medicare wont pay for it while she is an inpatient so today or tomorrow they are sending her home with a hospital bed and physical therapy. They also want to do a bone biopsey but told her it was painful and she says she is too old, been thru too much pain and doesnt want it........ her doctor is not an octologist, he is a regular MD (I never liked him and think he is a quack). She has an excellent surgeon though who also is on her case. I want to take her to the big city where they have a good cancer center hospital and get her a specialist, but she is telling me no. I honestly think she would just rather die :(
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
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    1Teresa said:

    I dont know
    They did an xray, 2 mris, a bone scan, a ct scan and a mamogram..... they want to do a colonoscopy but medicare wont pay for it while she is an inpatient so today or tomorrow they are sending her home with a hospital bed and physical therapy. They also want to do a bone biopsey but told her it was painful and she says she is too old, been thru too much pain and doesnt want it........ her doctor is not an octologist, he is a regular MD (I never liked him and think he is a quack). She has an excellent surgeon though who also is on her case. I want to take her to the big city where they have a good cancer center hospital and get her a specialist, but she is telling me no. I honestly think she would just rather die :(

    So sorry
    To hear that your mom seems to have given up. I can only imagine how hard this is for you and I wish I had the magic words to make you feel better.
    You might still be able to get her to get a second opinion now that she gave you POA but probably the most important thing you can do for her is just to love her and be there for her, which you're already doing.

    Sending big cyber HUGZ,
    Cindy
  • Alexis F
    Alexis F Member Posts: 3,598
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    So sorry
    To hear that your mom seems to have given up. I can only imagine how hard this is for you and I wish I had the magic words to make you feel better.
    You might still be able to get her to get a second opinion now that she gave you POA but probably the most important thing you can do for her is just to love her and be there for her, which you're already doing.

    Sending big cyber HUGZ,
    Cindy

    Reading Cindy's post hit home. If your Mom would consider it, how about a 2nd opinion?


    Just let her know you love her, that is the most important right now.
  • 1Teresa
    1Teresa Member Posts: 67
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    Alexis F said:

    Reading Cindy's post hit home. If your Mom would consider it, how about a 2nd opinion?


    Just let her know you love her, that is the most important right now.

    thank you
    I will keep trying to get her to agree to a 2nd opinion. I finally got to talk to the dr tonight and he says she has mets in her spine, pelvis and hip bones. He says it is bad too. He said that her lungs and breast are free though. He said her liver has 2 non cancerous cists in them. But he wants to check her colon too. She is feeling better right now because of the meds, but still she has trouble getting enough air sometimes... dont know why though. They are sending her home with a physical therapist and a hospital bed and an appointment for a colonoscopy. Right now it is one day at a time. I need to research what a bone biopsey is for and what it tells the doctor...... maybe she will become more cooperative about the 2nd opinion and stuff out of town if she starts feeling worse again? She just really doesnt want the car ride, it is about 2 hours to the "big city"
  • Angie2U
    Angie2U Member Posts: 2,991
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    1Teresa said:

    thank you
    I will keep trying to get her to agree to a 2nd opinion. I finally got to talk to the dr tonight and he says she has mets in her spine, pelvis and hip bones. He says it is bad too. He said that her lungs and breast are free though. He said her liver has 2 non cancerous cists in them. But he wants to check her colon too. She is feeling better right now because of the meds, but still she has trouble getting enough air sometimes... dont know why though. They are sending her home with a physical therapist and a hospital bed and an appointment for a colonoscopy. Right now it is one day at a time. I need to research what a bone biopsey is for and what it tells the doctor...... maybe she will become more cooperative about the 2nd opinion and stuff out of town if she starts feeling worse again? She just really doesnt want the car ride, it is about 2 hours to the "big city"

    I hope your Mom will go for
    I hope your Mom will go for a second opinion. It is always worth it.


    Praying for your Mom!


    Hugs, Angie