I am so sorry to hear about your mom. She is very lucky to have you to help her.
My understanding (and somewhat of a patchwork understanding at best) is that hospice care, regardless of the setting, is about managing a patient's needs as they near the end, Often times it includes pain medicine, but it can also be fluids, oxygen, etc. By turning your mom's care over to hospice, you are also agreeing to stop treating your mom's illness, and are just focused on making her passing comfortable.
Nursing homes make sure that patients follow a doctor's instructions, but they don't have the authority prescribe medicine or change a doctor's orders. From my experience, they may not be as sensitive to your mom, and hesitant to go back to the doctor to get a prescription changed or updated if your mom's needs change.
EJs mother was under hospice care at the hospital before she died (not of myeloma). They were a godsend! She was having trouble breathing and was uncomfortable and thrashing about a bit. They were able to help stabilize her so that family and friends could say their goodbyes.
Hope that helps. My thoughts and prayers are with you.
Lyn
Forums
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Final stage of multiple myeloma
In response to "onlychildtorose"
In regards to hospice care, it should be pursued as soon as possible when there is a condition in which life expectancy is less than 6 months and treatment is not desired. Hospice care is not only beneficial for the patient but also to help family members going through the end of life process. I would encourage you and your mom to visit with hospice physicians and staff to get more information as soon as possible.
In regards to hospice care, it should be pursued as soon as possible when there is a condition in which life expectancy is less than 6 months and treatment is not desired. Hospice care is not only beneficial for the patient but also to help family members going through the end of life process. I would encourage you and your mom to visit with hospice physicians and staff to get more information as soon as possible.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Final stage of multiple myeloma
My father is 82 years old and in the final stages of fighting this disease. I noticed a lot of posts refer to bone fractures as the bones are weakened. I was wondering if they were due to falls or are the bones so brittle that almost any force or exertion can cause them to break.
We are setting up with home health right now and hospice will transition in. Several family members are providing 24 hour care for him as he wishes to remain at home. I worry about the bones breaking as he is so frail and unsteady on his feet and needs assistance every time he is up. I don't know if he would let us use a gait belt or not or if it is even something we should consider?
Right now it is questionable if he will live to Thanksgiving and will be the third member of our immediate family to die in November. If anyone has thoughts or suggestions regarding how to prevent more bruising or bone fractures it may be helpful.
Thanks
We are setting up with home health right now and hospice will transition in. Several family members are providing 24 hour care for him as he wishes to remain at home. I worry about the bones breaking as he is so frail and unsteady on his feet and needs assistance every time he is up. I don't know if he would let us use a gait belt or not or if it is even something we should consider?
Right now it is questionable if he will live to Thanksgiving and will be the third member of our immediate family to die in November. If anyone has thoughts or suggestions regarding how to prevent more bruising or bone fractures it may be helpful.
Thanks
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j dewey
Re: Final stage of multiple myeloma
I can't speak for myself, I haven't had any fractures, but my sister had a pelvic break while lying in bed.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Final stage of multiple myeloma
My Dad was diagnosed in February of 2012 at the age of 78 with levels so high the oncologist was surprised he wasn't in a coma. He had 5 fractured ribs, which were mainly his only symptom (my 7 year old son jumped on him when they were goofing around which caused the fractures...thank goodness!) He had always been extremely healthy, his only surgery ever was a knee replacement. Which probably helped tremendously with his prognosis.
He was initially put on Velcade and Revlimid which worked wonders putting him close to remission in August of 2012. He started to decline, but mostly just feeling tired and weak. He was put in the hospital for a more traditional form of chemo in July 2013 and had a severe reaction (oral thrush) which turned into pneumonia. After 3 weeks in the hospital he came home with a walker and seemed to be doing fairly well. He was put on Thalomid, which didn't help much at all. He got progressively weaker and the Doctor was going to try another chemo but his platelets were too low and never seemed to get back up to a good level. He was admitted to the hospital on Wednesday September 18th, was told he only had a few weeks, decided he wanted to come home and was sent home in Hospice care on Friday September 20th around 1:00pm and passed around 5:00 that same day. Then end was very peaceful, not painful for him at all. I think that he just decided he was tired of fighting and he was ready to go. I'm not sure if this is a "typical" end story but just thought I would share.
He was initially put on Velcade and Revlimid which worked wonders putting him close to remission in August of 2012. He started to decline, but mostly just feeling tired and weak. He was put in the hospital for a more traditional form of chemo in July 2013 and had a severe reaction (oral thrush) which turned into pneumonia. After 3 weeks in the hospital he came home with a walker and seemed to be doing fairly well. He was put on Thalomid, which didn't help much at all. He got progressively weaker and the Doctor was going to try another chemo but his platelets were too low and never seemed to get back up to a good level. He was admitted to the hospital on Wednesday September 18th, was told he only had a few weeks, decided he wanted to come home and was sent home in Hospice care on Friday September 20th around 1:00pm and passed around 5:00 that same day. Then end was very peaceful, not painful for him at all. I think that he just decided he was tired of fighting and he was ready to go. I'm not sure if this is a "typical" end story but just thought I would share.
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Becky
Re: Final stage of multiple myeloma
Hi I have some questions that maybe someone can help me with.
My mother has been fighting stage 4 multiple myeloma for 4 years now in those for years she was in remission for a complete year after my father past away suddenly from pancreatic cancer (2 weeks after diagnosed). The day after was her doctors appointment the cancer was back. Well anyways she is on hospice now and has been for awhile now Her numbers are very low like white cells 15 hemoglobin 5 normal people would not be able to live on numbers as low as hers(straight from dr mouth).
Now me and my sister have been on the edge for the last 3 months because that is when she started having signs of only having weeks to live now she gets blood every 2 weeks and we go from not eating talking or anything to walking talking eating etc .. now I am not very sure that the by the book signs are correct and I know everyone passes differently but i would really like to hear of some of the ways to really tell not by the book but by people that have gone through it.
My mom is a fighter and she is not willing to give up so i know this will be a fight to the end. So proud of her she is the strongest woman I know. My Prayers also go out to anyone that has to go through with this. And for the people that are personally going through it FIGHT ON and GOD BLESS YOU.
My mother has been fighting stage 4 multiple myeloma for 4 years now in those for years she was in remission for a complete year after my father past away suddenly from pancreatic cancer (2 weeks after diagnosed). The day after was her doctors appointment the cancer was back. Well anyways she is on hospice now and has been for awhile now Her numbers are very low like white cells 15 hemoglobin 5 normal people would not be able to live on numbers as low as hers(straight from dr mouth).
Now me and my sister have been on the edge for the last 3 months because that is when she started having signs of only having weeks to live now she gets blood every 2 weeks and we go from not eating talking or anything to walking talking eating etc .. now I am not very sure that the by the book signs are correct and I know everyone passes differently but i would really like to hear of some of the ways to really tell not by the book but by people that have gone through it.
My mom is a fighter and she is not willing to give up so i know this will be a fight to the end. So proud of her she is the strongest woman I know. My Prayers also go out to anyone that has to go through with this. And for the people that are personally going through it FIGHT ON and GOD BLESS YOU.
Re: Final stage of multiple myeloma
Dear fellow multiple myeloma patients,
I was very pleased to find this forum where difficult questions are answered with such frankness and compassion.
I was diagnosed with multiple myeloma in 2005 after a long issue with lower back pain. I finally had x-rays made, and an astute x-ray tech told me that I had a lesion on T 12, and that I may want to see an oncologist. And there it began.
I had an autologous cell transplant that, although very uncomfortable, worked well. I was put on chemo and steroids for a while then patches for the pain.
As many would, I scoured the Internet for info and besides many conflicting articles learned that then, the average mortality expectancy was "3-5 years." But, look at me now : 9 years later and pretty stable blood results thanks to daily (expensive) 10 mg of Revlimid. Fortunately, the insurance company is picking up the lions share but still a co-pay of $600 per month. How can it still be SO expensive?
I had a pain pump implanted after T12 collapsed, and the doc is still tinkering with the titration.
All in all, life is good! I am not a spiritual person. More of a pragmatist, and I take things as they come. My lovely wife is the same and deserves major kudos for nursing me until I was back on my feet. I still use a cane for stability as the neuropathy in my feet is an issue that is slowly getting worse. So, no back flips in the future but who cares. I am 66 so.......
I have promised my wife a vacation in the south of France if we can swing it as a thank you for putting up with my cantankerous self. I really am an old grump, LOL.
Well y'all, sorry I rambled, I am not good speaking to crowds
Wishing you all strength and a compassionate friend or two.
Cheers,
Pete.
I was very pleased to find this forum where difficult questions are answered with such frankness and compassion.
I was diagnosed with multiple myeloma in 2005 after a long issue with lower back pain. I finally had x-rays made, and an astute x-ray tech told me that I had a lesion on T 12, and that I may want to see an oncologist. And there it began.
I had an autologous cell transplant that, although very uncomfortable, worked well. I was put on chemo and steroids for a while then patches for the pain.
As many would, I scoured the Internet for info and besides many conflicting articles learned that then, the average mortality expectancy was "3-5 years." But, look at me now : 9 years later and pretty stable blood results thanks to daily (expensive) 10 mg of Revlimid. Fortunately, the insurance company is picking up the lions share but still a co-pay of $600 per month. How can it still be SO expensive?
I had a pain pump implanted after T12 collapsed, and the doc is still tinkering with the titration.
All in all, life is good! I am not a spiritual person. More of a pragmatist, and I take things as they come. My lovely wife is the same and deserves major kudos for nursing me until I was back on my feet. I still use a cane for stability as the neuropathy in my feet is an issue that is slowly getting worse. So, no back flips in the future but who cares. I am 66 so.......
I have promised my wife a vacation in the south of France if we can swing it as a thank you for putting up with my cantankerous self. I really am an old grump, LOL.
Well y'all, sorry I rambled, I am not good speaking to crowds
Wishing you all strength and a compassionate friend or two.
Cheers,
Pete.
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Pete.
Re: Final stage of multiple myeloma
Thank you for sharing, Pete.
It is inspiring that you are 9 years after diagnosis and I know what you mean about how
this forum has people who answer difficult questions honestly.
I hope you and your wife have a wonderful vacation in France.
Cathy
It is inspiring that you are 9 years after diagnosis and I know what you mean about how
this forum has people who answer difficult questions honestly.
I hope you and your wife have a wonderful vacation in France.
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Final stage of multiple myeloma
My father was diagnosed with multiple myeloma in 2014, since that time he went through a lot of treatments, I think all kind of chemotherapy existing for this disease. He had also transplantation, which was enough only for 6 months.
After they tried to give him chemo again, but there was no response. So doctors told us that this is end stage, and only palliative care will take a place in this case. It was 6 months ago.
In this 6 months my father had pneumonia 3 times, and by now he is in horrible situation. He has very low thrombocytes (6), and very low hemoglobin (50). So he started to bleed, and bleeding all the time from his nose and mouth. He can not eat, because his mouth hurts him. He can not breathe normally, because the blood comes from his nose all the time. To be honest it is horrible.
Doctors give him blood and thrombocyte transmission, but all this is enough for 2 days, not more.
I don't know if it is possible to stop this bleeding; seems not. Everything hurts to him, so all the time he has to take pills. He can barely walk.
After they tried to give him chemo again, but there was no response. So doctors told us that this is end stage, and only palliative care will take a place in this case. It was 6 months ago.
In this 6 months my father had pneumonia 3 times, and by now he is in horrible situation. He has very low thrombocytes (6), and very low hemoglobin (50). So he started to bleed, and bleeding all the time from his nose and mouth. He can not eat, because his mouth hurts him. He can not breathe normally, because the blood comes from his nose all the time. To be honest it is horrible.
Doctors give him blood and thrombocyte transmission, but all this is enough for 2 days, not more.
I don't know if it is possible to stop this bleeding; seems not. Everything hurts to him, so all the time he has to take pills. He can barely walk.
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Selanka
Re: Final stage of multiple myeloma
Selenka,
I'm so sorry. This must be horrible for you and your family.
What country are you in? Do you have access to hospice care? Although hospice cannot treat the myeloma, they can provide treatments - even myeloma treatments - if it will help make your dad more comfortable and help him breathe and eat.
Good luck,
Lyn
I'm so sorry. This must be horrible for you and your family.
What country are you in? Do you have access to hospice care? Although hospice cannot treat the myeloma, they can provide treatments - even myeloma treatments - if it will help make your dad more comfortable and help him breathe and eat.
Good luck,
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53