It's been about a month since my last post. My mom's body has stopped responding to the platelet transfusions. They drop again after 1 day, so our family has decided to put her in hospice. She wants to be in hospice and is ready to pass. I've been offshore for the past 2 weeks worrying about her and have been getting updates from my brother. A couple days ago he gave me an update on her health that indicated I needed to request an early flight back home from my current offshore hitch. I'm here now in a hotel awaiting my flight back home tomorrow. I hope she can make it and is still relatively well enough to speak to me.
I'm scared to death of what she will be like when she's passing. Without platelets (which they won't give her in hospice), she will bleed non stop. I am so scared of seeing her in a pool of blood dying. It just sucks, she did nothing to deserve this. I hope it's nothing like that, but she gets blood bubbles in her mouth and bloody nose when she's low on platelets.
Just before I left for my offshore trip she was well, walking around the house, cooking, cleaning. Things just turned for the worst after I left. She got constipation, which led to the doctor giving her medicine that made her go too much and caused hemorrhoids. And then from there it just got worse and worse. Right now I"m expecting to last another week. I don't see how she can last any longer if she's going to be bleeding non stop. I just want to get home and spend one last moment with her.
Forums
Re: Final stage of multiple myeloma
Lt1981,
I hope you have made it home, and are able to spend some time with your mother.
My understanding of hospice is that they won't give you treatments to prolong your life, but they will allow treatments if the intent is to make the patient comfortable. it sounds like even if your mother gets the platelets, her disease has run its course. I don't believe anyone wants your mother to bleed uncontrollably, so please talk to hospice about continuing with the platelets, if only to make her last days comfortable.
All the best you and your family,
Lyn
I hope you have made it home, and are able to spend some time with your mother.
My understanding of hospice is that they won't give you treatments to prolong your life, but they will allow treatments if the intent is to make the patient comfortable. it sounds like even if your mother gets the platelets, her disease has run its course. I don't believe anyone wants your mother to bleed uncontrollably, so please talk to hospice about continuing with the platelets, if only to make her last days comfortable.
All the best you and your family,
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
Re: Final stage of multiple myeloma
Hi,
My father, who turns 87 today, was diagnosed almost a year ago. He had various treatments that seemed to keep the cancer at bay for the most of last year. Then in November his girlfriend had an issue with her back and while in the care of a nursing home she went into diabetic shock and never recovered and passed away after two weeks. Since then he had not been responding to the treatments and his oncologist didn't feel he was strong enough to have more. He had multiple blood transfusions and was responding well to the treatment until these past few months after his girlfriend died.
My mother passed away from cancer back in 2014 and he was very depressed afterwards until meeting his girlfriend a year after my Mom passed. It seemed she gave him a will to continue. Now he is giving up. He decided to not have any more treatment (his levels didn't improve with the blood and he felt someone else could benefit from the blood more than him), he is lonely and tired and feels it is time to go. He has been on hospice for a little over a week now, his last blood transfusion was 10 days ago and he has slowly started to decline. He has red blotches on his arms and legs, sores in his mouth and it is more and more difficult for him to get around and go to the bathroom. He refuses the hospice bed (he has always been a stubborn proud man) I hate to see him withering away like this.
I want to allow him his dignity for as long as possible. I have searched for information on what to expect as this progresses and it has been difficult finding information. This board has given me the most information as to what to expect.
He has served in the Army during the Korean war and was wounded, has survived prostrate cancer, quadruple bypass surgery and had pacemaker and defibrillator installed about 5 years ago, as his doctor once told him, "If you live long enough, you end up getting every problem". It was tough for all of us when my mom passed, she too was on hospice, but was medicated due to severe pain in the end and went peacefully. So far he is not in any pain and is coherent and talkative while awake, and is still eating pretty well. I wish I knew what to expect and if the bleeding and bruising is going to be painful.
So far he has not broken any bones, but the last bone biopsy he had last month the doctor said his bones were mushy when she was getting the sample, which means that may be a problem, especially if he falls while trying to walk to the bathroom. The hospice people with the company we have seem to lack the compassion the prior company we dealt with did. We asked for the nurse to come visit and were made to wait 2 days before they came out, then were told there was no schedule for the nurse to come by, that she/he would call a few hours before coming over. This is a difficult time for us as it is and they don't seem to be responsive to our needs.
Me and my sister are taking turns giving him around the clock care for now, but I don't know how I am going to be able to care for him when it gets near the end.
My father, who turns 87 today, was diagnosed almost a year ago. He had various treatments that seemed to keep the cancer at bay for the most of last year. Then in November his girlfriend had an issue with her back and while in the care of a nursing home she went into diabetic shock and never recovered and passed away after two weeks. Since then he had not been responding to the treatments and his oncologist didn't feel he was strong enough to have more. He had multiple blood transfusions and was responding well to the treatment until these past few months after his girlfriend died.
My mother passed away from cancer back in 2014 and he was very depressed afterwards until meeting his girlfriend a year after my Mom passed. It seemed she gave him a will to continue. Now he is giving up. He decided to not have any more treatment (his levels didn't improve with the blood and he felt someone else could benefit from the blood more than him), he is lonely and tired and feels it is time to go. He has been on hospice for a little over a week now, his last blood transfusion was 10 days ago and he has slowly started to decline. He has red blotches on his arms and legs, sores in his mouth and it is more and more difficult for him to get around and go to the bathroom. He refuses the hospice bed (he has always been a stubborn proud man) I hate to see him withering away like this.
I want to allow him his dignity for as long as possible. I have searched for information on what to expect as this progresses and it has been difficult finding information. This board has given me the most information as to what to expect.
He has served in the Army during the Korean war and was wounded, has survived prostrate cancer, quadruple bypass surgery and had pacemaker and defibrillator installed about 5 years ago, as his doctor once told him, "If you live long enough, you end up getting every problem". It was tough for all of us when my mom passed, she too was on hospice, but was medicated due to severe pain in the end and went peacefully. So far he is not in any pain and is coherent and talkative while awake, and is still eating pretty well. I wish I knew what to expect and if the bleeding and bruising is going to be painful.
So far he has not broken any bones, but the last bone biopsy he had last month the doctor said his bones were mushy when she was getting the sample, which means that may be a problem, especially if he falls while trying to walk to the bathroom. The hospice people with the company we have seem to lack the compassion the prior company we dealt with did. We asked for the nurse to come visit and were made to wait 2 days before they came out, then were told there was no schedule for the nurse to come by, that she/he would call a few hours before coming over. This is a difficult time for us as it is and they don't seem to be responsive to our needs.
Me and my sister are taking turns giving him around the clock care for now, but I don't know how I am going to be able to care for him when it gets near the end.
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JacquieMZ - Name: Jackie
- Who do you know with myeloma?: Father
- When were you/they diagnosed?: 2016
- Age at diagnosis: 86
Re: Final stage of multiple myeloma
My mom is still here a month after my last post, but not for long.
She's been admitted into inpatient hospice care. When admitted, she was in a lot of bone pain due to the myeloma, but still able to talk and think. Two days after that she is now stuck in bed sleeping all day, can open her eyes for a few seconds, and can't speak. Doctors are giving her a few more days.
The morphine they give her helps her get comfortable enough to fall asleep. I don't think she is in too much pain anymore, but does get uncomfortable and squirms with what little strength she has left when the pain medication starts running out.
It's very difficult to see her go downhill like this in just a week, but I'm glad she is resting and not feeling the pain while she sleeps.
She's been admitted into inpatient hospice care. When admitted, she was in a lot of bone pain due to the myeloma, but still able to talk and think. Two days after that she is now stuck in bed sleeping all day, can open her eyes for a few seconds, and can't speak. Doctors are giving her a few more days.
The morphine they give her helps her get comfortable enough to fall asleep. I don't think she is in too much pain anymore, but does get uncomfortable and squirms with what little strength she has left when the pain medication starts running out.
It's very difficult to see her go downhill like this in just a week, but I'm glad she is resting and not feeling the pain while she sleeps.
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Lt1981
Re: Final stage of multiple myeloma
Sorry to hear, Lt1981.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Final stage of multiple myeloma
Glad you were able to have some lucid days with your mom, Lt1981, and that you could see her not in pain. Heart goes out to you during this difficult time.
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moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: Final stage of multiple myeloma
My heart aches for you. Surround your mom with lots of love. Loving sounds, loving music, lots of warm touches. She is not alone. You are not alone.
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WholeNotherWorld - Who do you know with myeloma?: my husband
- When were you/they diagnosed?: Dec. 2016
- Age at diagnosis: 67
Re: Final stage of multiple myeloma
Hi all, I just want to share my fathers story.
My father who is now 51 was diagnosed with multiple myeloma in December 2012. He started treatment shortly after. He received his first stem cell transplant in May 2013. It was a success. But in February 2016 his cancer was back. He did treatment again, and received another stem cell transplant in June 2016. It was also successful, but not for long. He was told April 2017 his cancer was back.
Doctors didn't think doing another transplant would work. He started another treatment regimen, and got his first infusion, but his blood was so low they couldn't do any more. He started having a sore hip and they told him it was nerve damage. He had broken ribs. He was struggling with pain. We took him to the ER several times and it took two ambulance calls to get him admitted into the hospital. From there they realized he needed a hip replacement. They did the hip replacement and said they also remove a tumour from the area.
All seemed fine until two days later he couldn't move his legs and was numb from his chest down. He was now considered a paraplegic. They did MRI and found that there was a tumour growing inside the spine, behind it, and it was pushing the spinal receptors from T2 -T9. They decided to go ahead and start radiation for 5 days. He did the first one with no luck and continued with the second. Again it did not work. Doctors said it was the most aggressive case of multiple myeloma they have ever seen.
My father got frustrated, as he is a very active man and his worst fear was not walking again. He decided to go into palliative care at home. He wants to die so bad. My mother, sister, and myself are at home caring for him. It's hard and we have never experienced anything like this. Its hard having a loved one tell you how badly they want to die.
I write this as I watch him lay in his death bed. Unresponsive. Waiting to die. Things have progressed fairly quickly.
Thank you.
My father who is now 51 was diagnosed with multiple myeloma in December 2012. He started treatment shortly after. He received his first stem cell transplant in May 2013. It was a success. But in February 2016 his cancer was back. He did treatment again, and received another stem cell transplant in June 2016. It was also successful, but not for long. He was told April 2017 his cancer was back.
Doctors didn't think doing another transplant would work. He started another treatment regimen, and got his first infusion, but his blood was so low they couldn't do any more. He started having a sore hip and they told him it was nerve damage. He had broken ribs. He was struggling with pain. We took him to the ER several times and it took two ambulance calls to get him admitted into the hospital. From there they realized he needed a hip replacement. They did the hip replacement and said they also remove a tumour from the area.
All seemed fine until two days later he couldn't move his legs and was numb from his chest down. He was now considered a paraplegic. They did MRI and found that there was a tumour growing inside the spine, behind it, and it was pushing the spinal receptors from T2 -T9. They decided to go ahead and start radiation for 5 days. He did the first one with no luck and continued with the second. Again it did not work. Doctors said it was the most aggressive case of multiple myeloma they have ever seen.
My father got frustrated, as he is a very active man and his worst fear was not walking again. He decided to go into palliative care at home. He wants to die so bad. My mother, sister, and myself are at home caring for him. It's hard and we have never experienced anything like this. Its hard having a loved one tell you how badly they want to die.
I write this as I watch him lay in his death bed. Unresponsive. Waiting to die. Things have progressed fairly quickly.
Thank you.
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islandpeace
Re: Final stage of multiple myeloma
Island peace,
I am so sorry to hear of your father's deteriorating condition. It is the worst situation to watch a loved one give up hope and welcome death. My prayers are with you and your family. Thank you for sharing your father's story.
I am so sorry to hear of your father's deteriorating condition. It is the worst situation to watch a loved one give up hope and welcome death. My prayers are with you and your family. Thank you for sharing your father's story.
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Janet1520
Re: Final stage of multiple myeloma
Wow. You have my deepest sympathies, islandpeace. I can relate somewhat as my mother decided to stop treatment for chronic fatigue as well as several other maladies a couple of years ago. The doctors told her she'd likely die within a few months and she made it clear that this was her wish. It's a very difficult thing to hear from someone you're close to.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53