careing for the activley dying

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tanker sgv
tanker sgv Member Posts: 124
edited March 2014 in Colorectal Cancer #1
My mom has been fighting colon cancer for over a year and a half. she is now in the active dying stage with termanal aggatation. she has metastisis in the liver, uterus, and pelvic area. she also has sepstis. the halusanations, confusion, and pain are so bad. my heart bleeds for her she cant swallow and hasnt had any food or liqued for 4 days now. hospice has been great but i needed some advice from someone who has gone through this with a parent or loved one.
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  • PGLGreg
    PGLGreg Member Posts: 731
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    I've been through it, but I
    I've been through it, but I can't think how to help. Just take it an hour at a time. I sent my mother to hospital for the last days, where she was kept sedated until the end. No more pain.

    --Greg
  • lizzydavis
    lizzydavis Member Posts: 893
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    PGLGreg said:

    I've been through it, but I
    I've been through it, but I can't think how to help. Just take it an hour at a time. I sent my mother to hospital for the last days, where she was kept sedated until the end. No more pain.

    --Greg

    Tanker, my heart goes out to you.
    Tanker, you are going through a very difficult time and I am so sorry. Please know that being there with your Mom is comforting to her. She does not have to face this alone. If you have a religious leader you can call, he/she will be helpful to you. Wishing you peace.

    Lizzy
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
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    Hospice
    I'm so sorry to hear this. Is hospice keeping her as comfortable as they can (low pain)? i hope you have family or friends to support you during this hard time. Make sure to take care of yourself too.
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
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    Hello tanker
    I just went through this dying process with both of my parents. Dad passed away Aug. 15th and then Mom Oct.3rd. I am familiar with in home Hospice and the dying process.

    In our case Hospice brought in 24 hour LPN nurses the last few days...also called CC/continuous care.It helped us tremendously to have them there, eased up some of our load.
    If your Mom is in pain ask them if they can give her more meds. Sometimes all it takes is permission from a family member, especially the primary caregiver.My Mom's bowels shut down 14 days prior to her death. They kept giving her enemas and all the while stating that her *vault* was empty. Finally I asked "why are you giving her something that is so uncomfortable if she is not impacted?" ( She had stopped eating & drinking so of course nothing was there.)The nurse looked at me and said "all it takes is for you to say no more and we stop these enemas". I did and was glad I did.

    The terminal agitation can be very frightening. I was told it is normal, to a greater or lesser degree in most all patients who are in the dying process. My Mom had it to a great degree. Less than 80 lbs. and it took 3 of us to hold her in bed. This went on for 2 days and then it stopped and she passed away 2 days later.

    You can ask the Hospice nurse for something to keep her mouth moist. There is a gel and we used the sponge things that are on a stick and swabbed her mouth/tongue/lips about every hour.

    Last, I want to tell you how very, very sorry I am that you are going through this. It hurts so bad to watch someone you love dearly go through this. And truthfully, it will continue to hurt and your heart will break because you miss your Mama so much. But time does heal the hurt a little at a time.Please feel free to ask any question and if you prefer you can e-mail/private message me. I'm sure everyone else here will feel the same way.

    Take care of yourself and know that you have support from some very caring folks here.There is also a grief and bereavement forum here at CSN that might be of help to you at some time.

    -Pat
  • AnneCan
    AnneCan Member Posts: 3,673 Member
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    Tanker
    I am sorry you are going through this.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    Praying
    I've not been through it, but I want to tell you that I'm praying for you and your mom.

    *hugs*
    Gail
  • jararno
    jararno Member Posts: 186
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    So Sorry
    I am so sorry! I am not a religous person, but I remember praying that God would take my mother to end her suffering. She had battled a "mystery" illness and contracted a respiratory staph infection at the hospital.( Turned out it was lymphoma ).

    You are doing everthing that you can do.....I have heard that telling your mother that it is OK to go sometimes actually helps, but I think this might depend on each family and your mother's state of mind.

    As hard as it is to be there for her, you must know that you have done all that you can. Don't dwell on the what if's and the maybes.

    You also need to remember to try to eat and drink plenty of liquid. Getting sick yourself will not help.

    Are there other family members there to help? ( or hinder )? Sometimes the family stress turns pretty ugly as each person deals with the process differently.

    Try to breathe.....

    We are all thinking about you!

    Take Care,

    Barb
  • sharpy102
    sharpy102 Member Posts: 368 Member
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    so sorry tanker...I was
    so sorry tanker...I was there...but I don't think I can help you...I couldn't help my Mom either...All I wish to your mom that she will not be in big pain, or at least, not for long...I'll tell my Mom to greet her, so she's not alone up there!
  • Nana b
    Nana b Member Posts: 3,030 Member
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    sharpy102 said:

    so sorry tanker...I was
    so sorry tanker...I was there...but I don't think I can help you...I couldn't help my Mom either...All I wish to your mom that she will not be in big pain, or at least, not for long...I'll tell my Mom to greet her, so she's not alone up there!

    XXXXX
    She shouldn't be in pain, not now... See if you can help her get the meds she needs. I'm so sorry that you have to go through this. This site is so full of pain and loss, and at times it's so hard to repeat what you may have said to others. But strong we must be. Many hugs and may you find some relief in the days to come. I know you heart is breaking.
  • herdizziness
    herdizziness Member Posts: 3,624 Member
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    Went through this a few months ago
    I learned one thing, if you believe your mom is in pain, ask them to up the meds and frequency, if you don't ask, they don't do, is what I seemed to have learned.
    As for the dry and chapped lips that come, I bought a lip balm in a jar, I think it was called cartex, but there may be other brands, I don't know, but this does help, (the lip stuff that comes in the lipstick type container is too "rough" to put on, I worried I was hurting him doing that) I put it on Cousin Richard lips constantly. Hospice does have some sort of stuff on a stick, but it didn't seem to do a lot for his lips.
    As I would sit with Cousin Richard (he was in nursing care hospice)I brought in a lawn lounge chair so I could sit during the day and lay down at night beside him, holding his hand, it gave me comfort, I would sing songs to him, he loved Christmas, so there was a lot on Jingle Bells over and over (I was glad they didn't throw me in the looney bin). What I'm saying is talk to her about your childhood, your adulthood, the things she did for you, it will bring you both comfort.
    I felt that Cousin Richard's suffering made his passing a Mercy, relief at his final breath, that he was in pain no more.
    My heart goes out to you, it truly does. I wish I could help in a better way then just words.
    Take care of yourself, may you have peace in your heart when her time comes.
  • ktlcs
    ktlcs Member Posts: 358
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    Nana b said:

    XXXXX
    She shouldn't be in pain, not now... See if you can help her get the meds she needs. I'm so sorry that you have to go through this. This site is so full of pain and loss, and at times it's so hard to repeat what you may have said to others. But strong we must be. Many hugs and may you find some relief in the days to come. I know you heart is breaking.

    I wish
    I could help. I lost my husband in July and know how helpless you feel. His decline was very quick, 4 days, didn't even have time to set up hospice. What I can say is get her all of the pain meds you can, although they put her in a state where it will be tough to comunicate with her once the pain is gone she will be much more peaceful.

    My prayers are with you

    Kathy
  • tina dasilva
    tina dasilva Member Posts: 641
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    ktlcs said:

    I wish
    I could help. I lost my husband in July and know how helpless you feel. His decline was very quick, 4 days, didn't even have time to set up hospice. What I can say is get her all of the pain meds you can, although they put her in a state where it will be tough to comunicate with her once the pain is gone she will be much more peaceful.

    My prayers are with you

    Kathy

    I'm sooooo sorry
    Hun i'm so sorry to hear about your pain about your mom my prayers are with you Tina
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    Tanker
    Please ask for more pain meds. HUGS and PRAYERS to you and your mother
  • tanker sgv
    tanker sgv Member Posts: 124
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    Jaylo969 said:

    Hello tanker
    I just went through this dying process with both of my parents. Dad passed away Aug. 15th and then Mom Oct.3rd. I am familiar with in home Hospice and the dying process.

    In our case Hospice brought in 24 hour LPN nurses the last few days...also called CC/continuous care.It helped us tremendously to have them there, eased up some of our load.
    If your Mom is in pain ask them if they can give her more meds. Sometimes all it takes is permission from a family member, especially the primary caregiver.My Mom's bowels shut down 14 days prior to her death. They kept giving her enemas and all the while stating that her *vault* was empty. Finally I asked "why are you giving her something that is so uncomfortable if she is not impacted?" ( She had stopped eating & drinking so of course nothing was there.)The nurse looked at me and said "all it takes is for you to say no more and we stop these enemas". I did and was glad I did.

    The terminal agitation can be very frightening. I was told it is normal, to a greater or lesser degree in most all patients who are in the dying process. My Mom had it to a great degree. Less than 80 lbs. and it took 3 of us to hold her in bed. This went on for 2 days and then it stopped and she passed away 2 days later.

    You can ask the Hospice nurse for something to keep her mouth moist. There is a gel and we used the sponge things that are on a stick and swabbed her mouth/tongue/lips about every hour.

    Last, I want to tell you how very, very sorry I am that you are going through this. It hurts so bad to watch someone you love dearly go through this. And truthfully, it will continue to hurt and your heart will break because you miss your Mama so much. But time does heal the hurt a little at a time.Please feel free to ask any question and if you prefer you can e-mail/private message me. I'm sure everyone else here will feel the same way.

    Take care of yourself and know that you have support from some very caring folks here.There is also a grief and bereavement forum here at CSN that might be of help to you at some time.

    -Pat

    Thank-you

    Thank-you
  • tanker sgv
    tanker sgv Member Posts: 124
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    Lori-S said:

    Tanker
    Please ask for more pain meds. HUGS and PRAYERS to you and your mother

    The good thing about her
    The good thing about her being home is I give her, her meds and I learned quickly the amount the bottle says to give her is more of a guide line and leagel disclaimer than anything else! Its just hard to look at my 46yearold mother scream in agony and look like she's 80. I never thought i would look at my mom and hope every breath she takes is her last.
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
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    The good thing about her
    The good thing about her being home is I give her, her meds and I learned quickly the amount the bottle says to give her is more of a guide line and leagel disclaimer than anything else! Its just hard to look at my 46yearold mother scream in agony and look like she's 80. I never thought i would look at my mom and hope every breath she takes is her last.

    Call Hospice
    Dear Tanker...if your Hospice service is anything like the one we had then they have a 24 hour on call nurse. If your Mom is screaming in agony call them. She is not getting the right dose or the right kind of medications, or both.Is your Mom on Roxinal/Morphine? Does she have Ativan?There are medications that I don't know anything about that they can give her to ease her discomfort.

    Do you have any other family help? You are young according to your bio but you need rest too...and of course I am the preacher trying to sing to the choir.

    Please take care of yourself Tanker. Your Mother would want you to do that.

    -Pat
  • tanker sgv
    tanker sgv Member Posts: 124
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    Jaylo969 said:

    Call Hospice
    Dear Tanker...if your Hospice service is anything like the one we had then they have a 24 hour on call nurse. If your Mom is screaming in agony call them. She is not getting the right dose or the right kind of medications, or both.Is your Mom on Roxinal/Morphine? Does she have Ativan?There are medications that I don't know anything about that they can give her to ease her discomfort.

    Do you have any other family help? You are young according to your bio but you need rest too...and of course I am the preacher trying to sing to the choir.

    Please take care of yourself Tanker. Your Mother would want you to do that.

    -Pat

    She gets three 30mg rapid
    She gets three 30mg rapid release tabs every four hours, two 2mg ativans every three hours, throrozine every eight, and 1ml of liquid roxanal 20mg every hour. That's just what the bottles say to give........ don't get me wrong its finally starting to work. Its just that this whole experience sucks but on the other hand i look at her when she finnally goes to sleep and feel honored that i can help her through the most diffacult time of her life, DEATH.
  • krystiesq
    krystiesq Member Posts: 240 Member
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    She gets three 30mg rapid
    She gets three 30mg rapid release tabs every four hours, two 2mg ativans every three hours, throrozine every eight, and 1ml of liquid roxanal 20mg every hour. That's just what the bottles say to give........ don't get me wrong its finally starting to work. Its just that this whole experience sucks but on the other hand i look at her when she finnally goes to sleep and feel honored that i can help her through the most diffacult time of her life, DEATH.

    Oh, i'm so sorry
    I went through this in August. My mother died 08-29-10. Your description hits home. You are so very brave. I will be praying for you and your mother's transition. Don't feel guilty for feeling relieved when this ends. Make hospice take over so you don't have the burden of administering the meds. My mom was young too. I'm so sorry.
  • drookID
    drookID Member Posts: 20
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    She gets three 30mg rapid
    She gets three 30mg rapid release tabs every four hours, two 2mg ativans every three hours, throrozine every eight, and 1ml of liquid roxanal 20mg every hour. That's just what the bottles say to give........ don't get me wrong its finally starting to work. Its just that this whole experience sucks but on the other hand i look at her when she finnally goes to sleep and feel honored that i can help her through the most diffacult time of her life, DEATH.

    I'm so sorry.
    I am so sorry you are having to go through this. It is the hardest thing in the world!

    I might be wrong, but it sounds like your mom is taking faster acting pain medicine, and you have to give it to her quite often.

    We are going through this with my dad right now. He's got a broken hip due to a tumor in the bone, so any movement at all is extremely painful. We had to work with the hospice nurse to find something that provided longer lasting pain relief as well as a more constant level in his body. He is on a fentynl (sp?)time release patch every 48 hrs,and 1.25ml methadone about every 8 hours, and liquid oxy as needed for break thru pain (fast acting). The methadone builds up in his body, so even if he's an hour or so late getting some (because he's asleep), the pain isn't horrible. I don't know if any of these would help, but they might not hurt. The hospice nurse has been so nice, but we've had to push a couple of times when we felt dad wasn't getting what he needed.

    All I know is that it's the hardest thing I've ever done to watch my super strong, brave dad cry because I touched his leg or have water dripped into his mouth because he doesn't have the strength to suck anything up through a straw.

    Hang in there....a good friend who recently went through this told me that for every sad moment we're having now, we'll someday remember 10 moments that make us thankful we can be here with dad while he passes.

    ..Danialle
  • tanker sgv
    tanker sgv Member Posts: 124
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    drookID said:

    I'm so sorry.
    I am so sorry you are having to go through this. It is the hardest thing in the world!

    I might be wrong, but it sounds like your mom is taking faster acting pain medicine, and you have to give it to her quite often.

    We are going through this with my dad right now. He's got a broken hip due to a tumor in the bone, so any movement at all is extremely painful. We had to work with the hospice nurse to find something that provided longer lasting pain relief as well as a more constant level in his body. He is on a fentynl (sp?)time release patch every 48 hrs,and 1.25ml methadone about every 8 hours, and liquid oxy as needed for break thru pain (fast acting). The methadone builds up in his body, so even if he's an hour or so late getting some (because he's asleep), the pain isn't horrible. I don't know if any of these would help, but they might not hurt. The hospice nurse has been so nice, but we've had to push a couple of times when we felt dad wasn't getting what he needed.

    All I know is that it's the hardest thing I've ever done to watch my super strong, brave dad cry because I touched his leg or have water dripped into his mouth because he doesn't have the strength to suck anything up through a straw.

    Hang in there....a good friend who recently went through this told me that for every sad moment we're having now, we'll someday remember 10 moments that make us thankful we can be here with dad while he passes.

    ..Danialle

    I will ask about the liquid
    I will ask about the liquid oxy tomarow. But I think she is finally past the pain, I hope. She has been comatose all day with meds in the morning only. After seven days of agony she looks like she is starting to relax. She to cannot swallow and the liquid meds are hard for her as well.what I found works for that is to soak a piece of gauze, ring it out and squirt the meds on that. When I put it in her mouth she sucks on it(don't let go of the gauze) it forces her to swallow. I know ur pain. Thank you for the advice i hope mine can help. Just be their for ur dad and best wishes