After 3 months in the hospital following a course of DCEP and multiple infections, my mom is being discharged to hospice. She is no longer a candidate for chemo and has an active infection (aspergillus).
Currently, her blood counts have been stable for a few days without any transfusions. However, they are slowly trending downward, with her heme at 8.0 as of today's CBC. My understanding is that they won't do any CBCs in hospice and will only transfuse "for comfort" (e.g., give platelets if a person is bleeding).
I am wondering if anyone has experience with hospice. Her doctor currently thinks that she has about a month to live, but it is impossible to imagine that she can live that long with no transfusions. Any hospice experiences to relay?
The whole situation is very traumatic for all of us, so I'm looking for candid experiences of how myeloma plays out in hospice.
Thanks so much.
Forums
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Re: Hospice for multiple myeloma - what to expect?
I am so sorry you are having to go through this.
While I don't have experience with hospice regarding a multiple myeloma patient, I work alongside hospice often in my job. Each person's own experience with the dying process is different. Generally, all life prolonging treatment is stopped. The focus of hospice will be to keep your mom comfortable throughout the process. Many things impact this, whether they are still able to eat and drink being the most important.
I think that once you meet with the hospice nurse and staff you will come away with a clearer understanding of how things will progress. Take advantage of all the services offered. For example, you may not feel like the services of music therapy might provide much. But it may help your mom to relax, and give you a few moments to step away and catch your breath.
I wish there were more information that you could be given to help ease you in this situation. Unfortunately it is a very individual thing, and you just have to take it one day or hour at a time.
I hope this helps you a little bit, and again, so sorry you have to go through this.
While I don't have experience with hospice regarding a multiple myeloma patient, I work alongside hospice often in my job. Each person's own experience with the dying process is different. Generally, all life prolonging treatment is stopped. The focus of hospice will be to keep your mom comfortable throughout the process. Many things impact this, whether they are still able to eat and drink being the most important.
I think that once you meet with the hospice nurse and staff you will come away with a clearer understanding of how things will progress. Take advantage of all the services offered. For example, you may not feel like the services of music therapy might provide much. But it may help your mom to relax, and give you a few moments to step away and catch your breath.
I wish there were more information that you could be given to help ease you in this situation. Unfortunately it is a very individual thing, and you just have to take it one day or hour at a time.
I hope this helps you a little bit, and again, so sorry you have to go through this.
Re: Hospice for multiple myeloma - what to expect?
I'm very sorry that your mother has to go into hospice, Maura. This must be a very difficult time for you and your family, so I hope all of you are able to support each other and also get support from others.
There are two discussions here in the forum that may provide you with some insights. Some of the postings in the discussions specifically talk about hospice, but mostly the postings are about the final stages of myeloma. This means that many of the postings may be difficult for you to read. I am sorry if that will be the case, as I have no desire whatsoever to cause you or your family any additional stress. But, because you asked for feedback, I am assuming you want both the good and the bad so you can be as informed as possible and know what to expect.
Here are links to the two discussions I mentioned:
"Final stage of multiple myeloma," Beacon forum discussion started Aug 15, 2011
"What do people with multiple myeloma die from?," Beacon forum discussion started Jun 22, 2014.
Best of luck to you and, most of all, to your mother.
There are two discussions here in the forum that may provide you with some insights. Some of the postings in the discussions specifically talk about hospice, but mostly the postings are about the final stages of myeloma. This means that many of the postings may be difficult for you to read. I am sorry if that will be the case, as I have no desire whatsoever to cause you or your family any additional stress. But, because you asked for feedback, I am assuming you want both the good and the bad so you can be as informed as possible and know what to expect.
Here are links to the two discussions I mentioned:
"Final stage of multiple myeloma," Beacon forum discussion started Aug 15, 2011
"What do people with multiple myeloma die from?," Beacon forum discussion started Jun 22, 2014.
Best of luck to you and, most of all, to your mother.
-
Jonah
3 posts
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