Need a little help

beans2010
beans2010 Member Posts: 6

My mother in law was diganosed dec 5,2012 stage 4 lung cancer with mets. Started chemo week after and did radiation as yesterday at her doctors appointment, was taken off all treatments. cancer stronger than the chemo. doctor signed order for hospice. Today hospice came in got her admitted for home care for now, took vitals.  Blood pressure 90/50, oxygen level 78.  What am I to expect here?? How much long will she be in pain? What signs am I looking for? Anyone help me understand??

Comments

  • katenorwood
    katenorwood Member Posts: 1,912
    hospice

    Hello there,

    I am so sorry that you find yourselves in this position.  I cannot and I doubt if anyone can answer most of those questions.  But I can give you my experience with hospice and my Mother.  She had ovarian cancer with mets to both her lungs.  We did do home care with the help of our wonderful hospice team.  They can and will lead you all through this.  We were given a med box we kept in the fridge with mom's heavy duty pain meds and taught how to administer them.  Please ask or who ever is in charge of medical issues....any and all questions to your main hospice nurse.  They will lead you through everything honestly.  This will be one of the hardest things you all will endure....and yet one of the most loving things one person can do for another.  We also were given any and all medical equipment Mom needed.  I'll keep your family in my thoughts and prayers.   Katie 

  • dennycee
    dennycee Member Posts: 857 Member
    Dealing with the pain.

    Unfortunately, there is no way to know.  She may last weeks or a couple months Or a few days.  If she is having a lot of pain you may want to ask about liquid morphine or a morphine pump.  The pump dispenses the morphine automatically and the hospice nurse can adjust the dosage.  It allows the patient or caretaker to give an extra dose of the pain med but it is set for a max amount and will not exceed that so there is no possibility of an overdose.  Morphine is a central nervous system depressant so it will affect her breathing, her appetite and make her sleepy.  

    In her last days, my mom had a lot of confusion, especially at night.  She also had auditory hallucinations and false memories.  At a certain point, physical stimulation caused seizures.  Mentally, she went to a place that I called between.  she was in this world but having conversations and dancing with people only she could see and here.  At the same time she seemed aware that we were talking to her but couldnt answer.  The hospice nurse told is that the "between place" helps them separate from pain.  eventually the organs shut down and respiration drops.  her nurse will be able to give you more info.  

    Bless you for taking care of her. It is not an easy thing.  When my mom let go of life I felt an odd kind of peace and a little like I was a midwife helping her into sher new life.  My sister felt the same way.  

     

  • beans2010
    beans2010 Member Posts: 6
    dennycee said:

    Dealing with the pain.

    Unfortunately, there is no way to know.  She may last weeks or a couple months Or a few days.  If she is having a lot of pain you may want to ask about liquid morphine or a morphine pump.  The pump dispenses the morphine automatically and the hospice nurse can adjust the dosage.  It allows the patient or caretaker to give an extra dose of the pain med but it is set for a max amount and will not exceed that so there is no possibility of an overdose.  Morphine is a central nervous system depressant so it will affect her breathing, her appetite and make her sleepy.  

    In her last days, my mom had a lot of confusion, especially at night.  She also had auditory hallucinations and false memories.  At a certain point, physical stimulation caused seizures.  Mentally, she went to a place that I called between.  she was in this world but having conversations and dancing with people only she could see and here.  At the same time she seemed aware that we were talking to her but couldnt answer.  The hospice nurse told is that the "between place" helps them separate from pain.  eventually the organs shut down and respiration drops.  her nurse will be able to give you more info.  

    Bless you for taking care of her. It is not an easy thing.  When my mom let go of life I felt an odd kind of peace and a little like I was a midwife helping her into sher new life.  My sister felt the same way.  

     

    Thank you so much for your

    Thank you so much for your replies. My biggest concern I guess is she is on methadone and liquid morphine and the pain is still a 6 out of 10. She is sleeping a a lot and  is having weird stories with us.  Her memory is not good from this going on now but from the past she remembers everything! It's amazing! she is so weak and shaky, we have to crush her pills for her to swallow and has thrush down her throat. This is all very scary.. I just need to know some signs. 

  • dennycee
    dennycee Member Posts: 857 Member
    beans2010 said:

    Thank you so much for your

    Thank you so much for your replies. My biggest concern I guess is she is on methadone and liquid morphine and the pain is still a 6 out of 10. She is sleeping a a lot and  is having weird stories with us.  Her memory is not good from this going on now but from the past she remembers everything! It's amazing! she is so weak and shaky, we have to crush her pills for her to swallow and has thrush down her throat. This is all very scary.. I just need to know some signs. 

    It sounds very much like you

    It sounds very much like you are seeing the beginning. I'm thinking that her inability to swallow pills is a precursor other inability to swallow food or water. This is all I can remember.  Your hospice nurse is on call 24/7/365.  They get questions like yours from just about every new patients family.  I hope some of this helped.  

    There are some mouth swabs that are sold at the med supply places.  Try using them with a touch of baking soda and water.  Better yet ask the hospice nurse about the thrush.  It's their job to make her comfortable.  

    Wishing you strength and peace of mind.  

     

     

     

  • RyanL
    RyanL Member Posts: 1
    Get Fast, Reliable Help

    I understand what you’re going through this time, Beans2010. Lung cancer treatment is indeed very necessary for your mother-in-law. However, based on your story, the availability of reliable and knowledgeable persons can greatly affect the decision-making. Your love to your mother-in-law is so amazing that you do care for her. And in my little way, I want to share with you this very helpful site for lung cancer treatment options so that you can be guided by reliable doctors. Remember, there are many others who have the same problem with you. So be strong and be calm so that you can think of positive ways ahead.     

  • beans2010
    beans2010 Member Posts: 6
    RyanL said:

    Get Fast, Reliable Help

    I understand what you’re going through this time, Beans2010. Lung cancer treatment is indeed very necessary for your mother-in-law. However, based on your story, the availability of reliable and knowledgeable persons can greatly affect the decision-making. Your love to your mother-in-law is so amazing that you do care for her. And in my little way, I want to share with you this very helpful site for lung cancer treatment options so that you can be guided by reliable doctors. Remember, there are many others who have the same problem with you. So be strong and be calm so that you can think of positive ways ahead.     

    Hi everyone, it's been a

    Hi everyone, it's been a little bit.. We are moving my mother in law to a hospice house tomorrow. She has become so confused, seeing things that are not there.  Has gotten really bad really quick.. very sad. :-(

  • Rosi
    Rosi Member Posts: 69
    beans2010 said:

    Hi everyone, it's been a

    Hi everyone, it's been a little bit.. We are moving my mother in law to a hospice house tomorrow. She has become so confused, seeing things that are not there.  Has gotten really bad really quick.. very sad. :-(

    Praying for you

    I am so sorry, you are in my prayers.

  • beans2010
    beans2010 Member Posts: 6
    Rosi said:

    Praying for you

    I am so sorry, you are in my prayers.

    So here I am again, 1 week

    So here I am again, 1 week after we have put my mother-in-law into a hospice house.  She was not happy about going but did agree.  She had a good night that night and that Friday she actually ate a little breakfast and was drinking friday. (1 week ago).  Then it started...  Saturday started the down ward sprial.  She stopped eating all together.  She did not want anything..  She was a little agitated. Saturday came and gone, she slept most of her day and night away, in and out watching tv and drinking small amounts of water.  Sunday got worse, her fingers were starting to become a light blue and her ability to reconginze people was gone.  She had no clue who I was or her son.  Sunday again a little worse, did not get out of bed and was agitated even more, with way less time awake. Pulling at her bed sheets, no words really coming out of her mouth and not acepting her medicines, took alot of us to convinence her that she needed to.  Monday (2-11) was horrible......  Terminal agitation kicked in.  She was yelling and screaming and refusing to take medicine, trying to get out of bed.  She got her catherider in and kept stating that she needed to go, she need to get out of bed and she needed to go to the bathroom, not remember that she had a catherider.  It was a very long day and she slowly settled but could have no more than 2 people in the room with out her getting over whelmed. Tuesday took a huge turn for the worst.  She was mottled..  hands, fingers, knees, feet.  no urine over night (monday into tuesday) and she finally slipped into what we thought was her coma.  wednesday was a horrible day, I got there at the same time and to my surprise I walked in to her completely mottled (including lips and face), "death gurggle" and no movement...  We thought WOW this could be the end... and she would no longer emotionally be suffering.  So we just hung aroung the hospice house and about 7pm that night she sat up and was trying to speak to all of us..  No words could come out of her mouth.  Very sad. but she slipped into that termial agitation all over again.   3am she woke up with a huge scream and trying to crawl out of bed grasping at air, grabbing at my clothes and my face and the same things to her son..  We figured out she was blind...  Horrible horrible things.. Scared me so very much.  So much anixety could not get her settled.  Still no urine... He dr ordered drugs tons of drugs, double everything she is on we need to get her to settle down so she stops.. that night (wednesday) she produced 50 cc's of urine.. Where it came from I have no clue.... and again at the sleep stage.  slow agitated thursday, just trying to get her comfy at this point.  Only words she can say that we undersatand, HELP ME, IM SCARED.  She slepy through the night and again no urine over night.  Did I mention NOTHING TO DRINK SINCE MONDAY!!! today a few family came in and seemed to be she started to be in peace with all of this.. slept the whole day and looked finally comfy, until 3pm and she lifted her arms screaming , im not ready, dont take me yet, its not time..  I can not image that this can go on much longer, with no water since monday, no urine since wednesday about 11pm. Does anyone know how long your body can go with out fluids (5 days) and with no urnie out put for over 24 hours??? This has been a horibile horbile death expeience for her and I hate to see her suffer any longer. And she just producerd 120cc's of urine- nothing to drink in 5 days..  what is going on???

  • beans2010 said:

    So here I am again, 1 week

    So here I am again, 1 week after we have put my mother-in-law into a hospice house.  She was not happy about going but did agree.  She had a good night that night and that Friday she actually ate a little breakfast and was drinking friday. (1 week ago).  Then it started...  Saturday started the down ward sprial.  She stopped eating all together.  She did not want anything..  She was a little agitated. Saturday came and gone, she slept most of her day and night away, in and out watching tv and drinking small amounts of water.  Sunday got worse, her fingers were starting to become a light blue and her ability to reconginze people was gone.  She had no clue who I was or her son.  Sunday again a little worse, did not get out of bed and was agitated even more, with way less time awake. Pulling at her bed sheets, no words really coming out of her mouth and not acepting her medicines, took alot of us to convinence her that she needed to.  Monday (2-11) was horrible......  Terminal agitation kicked in.  She was yelling and screaming and refusing to take medicine, trying to get out of bed.  She got her catherider in and kept stating that she needed to go, she need to get out of bed and she needed to go to the bathroom, not remember that she had a catherider.  It was a very long day and she slowly settled but could have no more than 2 people in the room with out her getting over whelmed. Tuesday took a huge turn for the worst.  She was mottled..  hands, fingers, knees, feet.  no urine over night (monday into tuesday) and she finally slipped into what we thought was her coma.  wednesday was a horrible day, I got there at the same time and to my surprise I walked in to her completely mottled (including lips and face), "death gurggle" and no movement...  We thought WOW this could be the end... and she would no longer emotionally be suffering.  So we just hung aroung the hospice house and about 7pm that night she sat up and was trying to speak to all of us..  No words could come out of her mouth.  Very sad. but she slipped into that termial agitation all over again.   3am she woke up with a huge scream and trying to crawl out of bed grasping at air, grabbing at my clothes and my face and the same things to her son..  We figured out she was blind...  Horrible horrible things.. Scared me so very much.  So much anixety could not get her settled.  Still no urine... He dr ordered drugs tons of drugs, double everything she is on we need to get her to settle down so she stops.. that night (wednesday) she produced 50 cc's of urine.. Where it came from I have no clue.... and again at the sleep stage.  slow agitated thursday, just trying to get her comfy at this point.  Only words she can say that we undersatand, HELP ME, IM SCARED.  She slepy through the night and again no urine over night.  Did I mention NOTHING TO DRINK SINCE MONDAY!!! today a few family came in and seemed to be she started to be in peace with all of this.. slept the whole day and looked finally comfy, until 3pm and she lifted her arms screaming , im not ready, dont take me yet, its not time..  I can not image that this can go on much longer, with no water since monday, no urine since wednesday about 11pm. Does anyone know how long your body can go with out fluids (5 days) and with no urnie out put for over 24 hours??? This has been a horibile horbile death expeience for her and I hate to see her suffer any longer. And she just producerd 120cc's of urine- nothing to drink in 5 days..  what is going on???

    So sorry

    I can't even imagine what you and your family are going through.  My heart goes out to you.

    I pray that God will give her and you peace.

  • beans2010
    beans2010 Member Posts: 6
    This roller coaster we are on

    This roller coaster we are on is horrible....  Mom produced another 100 cc's of urine last night, and has no fluid intake since monday (2-11-13).  I have no clue where she is getting all this fluid from.  She now is almost always moaning and it looks like she has popped a blood vessel in her eye, its pretty red.  Hard to say how much longer, we were given 24 hours 3 times and now we just dont say...  THIS IS HORRIBLE.

  • dennycee
    dennycee Member Posts: 857 Member
    beans2010 said:

    So here I am again, 1 week

    So here I am again, 1 week after we have put my mother-in-law into a hospice house.  She was not happy about going but did agree.  She had a good night that night and that Friday she actually ate a little breakfast and was drinking friday. (1 week ago).  Then it started...  Saturday started the down ward sprial.  She stopped eating all together.  She did not want anything..  She was a little agitated. Saturday came and gone, she slept most of her day and night away, in and out watching tv and drinking small amounts of water.  Sunday got worse, her fingers were starting to become a light blue and her ability to reconginze people was gone.  She had no clue who I was or her son.  Sunday again a little worse, did not get out of bed and was agitated even more, with way less time awake. Pulling at her bed sheets, no words really coming out of her mouth and not acepting her medicines, took alot of us to convinence her that she needed to.  Monday (2-11) was horrible......  Terminal agitation kicked in.  She was yelling and screaming and refusing to take medicine, trying to get out of bed.  She got her catherider in and kept stating that she needed to go, she need to get out of bed and she needed to go to the bathroom, not remember that she had a catherider.  It was a very long day and she slowly settled but could have no more than 2 people in the room with out her getting over whelmed. Tuesday took a huge turn for the worst.  She was mottled..  hands, fingers, knees, feet.  no urine over night (monday into tuesday) and she finally slipped into what we thought was her coma.  wednesday was a horrible day, I got there at the same time and to my surprise I walked in to her completely mottled (including lips and face), "death gurggle" and no movement...  We thought WOW this could be the end... and she would no longer emotionally be suffering.  So we just hung aroung the hospice house and about 7pm that night she sat up and was trying to speak to all of us..  No words could come out of her mouth.  Very sad. but she slipped into that termial agitation all over again.   3am she woke up with a huge scream and trying to crawl out of bed grasping at air, grabbing at my clothes and my face and the same things to her son..  We figured out she was blind...  Horrible horrible things.. Scared me so very much.  So much anixety could not get her settled.  Still no urine... He dr ordered drugs tons of drugs, double everything she is on we need to get her to settle down so she stops.. that night (wednesday) she produced 50 cc's of urine.. Where it came from I have no clue.... and again at the sleep stage.  slow agitated thursday, just trying to get her comfy at this point.  Only words she can say that we undersatand, HELP ME, IM SCARED.  She slepy through the night and again no urine over night.  Did I mention NOTHING TO DRINK SINCE MONDAY!!! today a few family came in and seemed to be she started to be in peace with all of this.. slept the whole day and looked finally comfy, until 3pm and she lifted her arms screaming , im not ready, dont take me yet, its not time..  I can not image that this can go on much longer, with no water since monday, no urine since wednesday about 11pm. Does anyone know how long your body can go with out fluids (5 days) and with no urnie out put for over 24 hours??? This has been a horibile horbile death expeience for her and I hate to see her suffer any longer. And she just producerd 120cc's of urine- nothing to drink in 5 days..  what is going on???

    What is going on is that the

    What is going on is that the brain is shutting down certain body functions to protect the organs essential to sustain life.  The fingers, toes and other extremities are turning blue and becoming mottled because the blood cannot carry enough oxygen to them as parts of circulation become impaired. 

    This is frightening for patient and family both. I went through this with my mom as well.  When she gets agitated, if she can tolerate being touch, gently rub her arm and talk to her in gentle tone to help her feel grounded.  My prayer for you is for strength and comfort in the company of your loved ones.  

  • Rosi
    Rosi Member Posts: 69
    beans2010 said:

    This roller coaster we are on

    This roller coaster we are on is horrible....  Mom produced another 100 cc's of urine last night, and has no fluid intake since monday (2-11-13).  I have no clue where she is getting all this fluid from.  She now is almost always moaning and it looks like she has popped a blood vessel in her eye, its pretty red.  Hard to say how much longer, we were given 24 hours 3 times and now we just dont say...  THIS IS HORRIBLE.

    She needs to let it go

    4 days before my husband pass, he told me I think I am ready to go, my time is come. The day before he called me to lay with him in the bed I did and we hold hangs and told me I am ready and told me how much he loves me, the following day he was gone.

    reading your letter made me cry, because I remember it was the same with him untill he acepted it was time, Can somebody in the family that is very chose to her tell her that is ok to go?

    and pray, pray.

  • Rosi
    Rosi Member Posts: 69
    beans2010 said:

    This roller coaster we are on

    This roller coaster we are on is horrible....  Mom produced another 100 cc's of urine last night, and has no fluid intake since monday (2-11-13).  I have no clue where she is getting all this fluid from.  She now is almost always moaning and it looks like she has popped a blood vessel in her eye, its pretty red.  Hard to say how much longer, we were given 24 hours 3 times and now we just dont say...  THIS IS HORRIBLE.

    She needs to let it go

    4 days before my husband pass, he told me I think I am ready to go, my time is come. The day before he called me to lay with him in the bed I did and we hold hangs and told me I am ready and told me how much he loves me, the following day he was gone.

    reading your letter made me cry, because I remember it was the same with him untill he acepted it was time, Can somebody in the family that is very chose to her tell her that is ok to go?

    and pray, pray.

  • beans2010
    beans2010 Member Posts: 6
    Rosi said:

    She needs to let it go

    4 days before my husband pass, he told me I think I am ready to go, my time is come. The day before he called me to lay with him in the bed I did and we hold hangs and told me I am ready and told me how much he loves me, the following day he was gone.

    reading your letter made me cry, because I remember it was the same with him untill he acepted it was time, Can somebody in the family that is very chose to her tell her that is ok to go?

    and pray, pray.

    It's sad to post this, mom

    It's sad to post this, mom passed on Monday 2-18-13 . She was at peace when she left us and it was a long road short road but she now is our angel. rip mom 

  • Dads_Team
    Dads_Team Member Posts: 4
    beans2010 said:

    It's sad to post this, mom

    It's sad to post this, mom passed on Monday 2-18-13 . She was at peace when she left us and it was a long road short road but she now is our angel. rip mom 

    I know it was painful for you

    I know it was painful for you to post, but for those of us still on this journey, you helped provide such helpful insight through what you shared.  My deepest sympathy to you and your family.

  • dennycee
    dennycee Member Posts: 857 Member
    beans2010 said:

    It's sad to post this, mom

    It's sad to post this, mom passed on Monday 2-18-13 . She was at peace when she left us and it was a long road short road but she now is our angel. rip mom 

    My deepest sympathy

    So sorry for you and your family. 

  • Rosi
    Rosi Member Posts: 69
    dennycee said:

    My deepest sympathy

    So sorry for you and your family. 

    Still praying

    Beens, She is in peace now,she is in a better place.

    I will keep praying for the rest of the family and remember the good times!

  • beans2010 said:

    It's sad to post this, mom

    It's sad to post this, mom passed on Monday 2-18-13 . She was at peace when she left us and it was a long road short road but she now is our angel. rip mom 

    so sorry

    I am so sorry