mother wrote a book about her cancer care

susankimberly
susankimberly Member Posts: 8
edited March 2014 in Breast Cancer #1
where to begin? well, since my mom (age 76) was diagnosed with aggressive breast cancer six years ago, it's been a total nightmare. she felt led by God to write a book about her experience beginning with the fact that her original diagnosis was a misdiagnosis.
she wrote the entire book longhand with me typing it here at home. many times we'd work using a phone; her dictating and me typing her words. we finished the manuscript in November 2009. she was looking for a Christian literary agent when she contracted what was allegedly pneumonia. by now her cancer has spread to her lungs and other places. at this point she is in hospice getting ready to move today to a care facility. her adult children have all volunteered to have her live with one of them. i offered to live with her and care for her at her apartment. she is making the decision to go to a care facility. she is just very tired of fighting. in Hospice she has had to look after her care because mistakes have been made. i've witnessed a few of them the few times i've been there. it is unbelievable. I know there are great hospices but this facility is not one of them.
a big for instance, we were questioning whether my mom should have a thorough exam to determine why she couldn't talk and was having difficulty swallowing. mom was getting around, socializing, eating and drinking fine at Christmas. the doctor on duty -- her hospice doctor -- said that she conferred at length with my mom's oncologist and her general practitioner (gp). the next day the gp returned our phone call and we (siblings) happened to be in the same car. on speaker phone we talked with the gp -- a very successful, very busy doctor about our concerns about mom not getting a definitive diagnosis (besides cancer). we mentioned that Dr. R at Hospice told us she had conferred at length with him two days before. He said, "I never spoke with Dr. R." The hospice doctor outright lied to us. i am so angry and confused.

Comments

  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #2
    Susan, it does sound like a
    Susan, it does sound like a nightmare and not at all like the hospice facilities or personnel that I have had the pleasure of associating with. I hope I read your email correctly and your mom is getting moved OUT of this facility today. Is that correct? I hope so for your mother's sake. Please continue to post and if there is anything we or I can do for you, just ask. Take care and good luck with your mom!!
  • susankimberly
    susankimberly Member Posts: 8
    #3
    MyTurnNow said:

    Susan, it does sound like a
    Susan, it does sound like a nightmare and not at all like the hospice facilities or personnel that I have had the pleasure of associating with. I hope I read your email correctly and your mom is getting moved OUT of this facility today. Is that correct? I hope so for your mother's sake. Please continue to post and if there is anything we or I can do for you, just ask. Take care and good luck with your mom!!

    moving today
    thank you for your reply. my mom can barely whisper. she has blisters in her throat. but she is alert and communicative. she is getting weak because she does not have fluids (not recommended for terminal patients and is expensive) she struggles to walk to bathroom and doesn't want to have to go so she is not drinking much now. my sister is giving up getting a definitive diagnosis. this is the end -- yes, but does mom have to needlessly suffer during her last days?

    i watched the nurse drop on the floor my mom's thrush medicine (in a plastic, coffee cream-like container). The nurse picked it back up with her bare hands and then handed it to mom to put to her mouth to drink. this is just one incident i've witnessed.

    i think i might be posting this on the wrong board because i've noticed people on here just beginning this entire process and we are at the end as far as we know . . .
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #4
    susankimberly said:

    moving today
    thank you for your reply. my mom can barely whisper. she has blisters in her throat. but she is alert and communicative. she is getting weak because she does not have fluids (not recommended for terminal patients and is expensive) she struggles to walk to bathroom and doesn't want to have to go so she is not drinking much now. my sister is giving up getting a definitive diagnosis. this is the end -- yes, but does mom have to needlessly suffer during her last days?

    i watched the nurse drop on the floor my mom's thrush medicine (in a plastic, coffee cream-like container). The nurse picked it back up with her bare hands and then handed it to mom to put to her mouth to drink. this is just one incident i've witnessed.

    i think i might be posting this on the wrong board because i've noticed people on here just beginning this entire process and we are at the end as far as we know . . .

    Susan, no, you mom
    Susan, no, you mom absolutely should not have to suffer. There is no excuse for the lack of care or haphazard care that your mom is receiving. Thank goodness, she is being moved today. I will hope it is to a caring facility.

    There are several other discussion boards on this site. There is one specifically for caregivers and another one for emotional support. This particular board is for breast cancer individuals and does have a lot of members that are in the beginning of their treatments as well as members that have been in remission for years. There are no end of life members, to my knowledge. That is not to say that we would want you to discontinue posting here as I mentioned in my last post, I will do whatever I can to help you. If it means nothing more than listening please know I'm here. I've dealt with the loss of my own mother just 3 short years ago and completely understand and can appreciate your heavy heart.

    Best of luck to you in getting your mom settled today. Please let us know how you and she are doing. Take care.
  • susankimberly
    susankimberly Member Posts: 8
    #5
    MyTurnNow said:

    Susan, no, you mom
    Susan, no, you mom absolutely should not have to suffer. There is no excuse for the lack of care or haphazard care that your mom is receiving. Thank goodness, she is being moved today. I will hope it is to a caring facility.

    There are several other discussion boards on this site. There is one specifically for caregivers and another one for emotional support. This particular board is for breast cancer individuals and does have a lot of members that are in the beginning of their treatments as well as members that have been in remission for years. There are no end of life members, to my knowledge. That is not to say that we would want you to discontinue posting here as I mentioned in my last post, I will do whatever I can to help you. If it means nothing more than listening please know I'm here. I've dealt with the loss of my own mother just 3 short years ago and completely understand and can appreciate your heavy heart.

    Best of luck to you in getting your mom settled today. Please let us know how you and she are doing. Take care.

    i'm sorry to sound like a cry baby
    but yesterday when my sister and I were at hospice we went out to lunch and came back. mom said that while we were gone she stopped breathing. it's the first time this has happened as far as we know. mom called for an aide who came to her room, stood over her and said, "What do you want me to do?" it's unbelievable. very depressing.
  • Kat11
    Kat11 Member Posts: 1,931 Member
    #6
    MyTurnNow said:

    Susan, no, you mom
    Susan, no, you mom absolutely should not have to suffer. There is no excuse for the lack of care or haphazard care that your mom is receiving. Thank goodness, she is being moved today. I will hope it is to a caring facility.

    There are several other discussion boards on this site. There is one specifically for caregivers and another one for emotional support. This particular board is for breast cancer individuals and does have a lot of members that are in the beginning of their treatments as well as members that have been in remission for years. There are no end of life members, to my knowledge. That is not to say that we would want you to discontinue posting here as I mentioned in my last post, I will do whatever I can to help you. If it means nothing more than listening please know I'm here. I've dealt with the loss of my own mother just 3 short years ago and completely understand and can appreciate your heavy heart.

    Best of luck to you in getting your mom settled today. Please let us know how you and she are doing. Take care.

    There is no reasom for this
    There is no reasom for this kind of treatment. My mother was under hospice care and was treated very well. Honestly I don't know what I would have done with out them. Ask for morphine for her. They only have to give a drop or two and it really helps them relax. There is no need for her to suffer. Best of luck to you, I know how hard this can be. Hugs
  • susankimberly
    susankimberly Member Posts: 8
    #7
    Kat11 said:

    There is no reasom for this
    There is no reasom for this kind of treatment. My mother was under hospice care and was treated very well. Honestly I don't know what I would have done with out them. Ask for morphine for her. They only have to give a drop or two and it really helps them relax. There is no need for her to suffer. Best of luck to you, I know how hard this can be. Hugs

    thank you
    mom is now at a nursing care center that she says she likes. unlike hospice they are giving her nutrients three times per day via a shot-sized glass of vitamins and minerals. she misses her bed and the quietness of her bedroom at her apartment. nevertheless, she seems to feel safe at this facility and says everyone seems to be very nice and helpful.

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