[herrera]

Mom in hospice - is there really no more to do?

by herrera on Thu Jun 12, 2014 9:36 am

Hi, I'm Herrera. My Mom was diagnosed with multiple myeloma about 12 years ago.

This year has been the hardest for her. She has been hospitalized three times, once with pneumonia. Her body has stopped producing any blood cells so her red and white cell count are very low. She has been taking Neupogen shots to help build her white cells. Her bones are aching very badly because of the shots. She has been in severe pain for about 2 months now. She has trouble walking and sometimes even a blanket on her legs causes severe pain.

She was hospitalized just this Monday for a high fever. The doctor said she has a blood infection. He said there's nothing else he can do for her. He released her yesterday under the care of hospice. She says this is "it".

Can anyone help me with this?

I know this can be a painful subject. She has had many set backs before and pulled out just fine. Is this a set back? Has anyone had this happen to them or someone close to them?

[Joy]

Re: Mom in hospice - is there really no more to do?

by Joy on Fri Jun 13, 2014 7:00 am

Hi Herrera,

I'm so sorry to hear about your mom. I don't have experience with this yet so I don't have any advice unfortunately. The only thing that comes to mind is getting a second opinion to put your mind at ease.

But, it sounds like your mom has received good care and I know it's difficult to do treatments if blood counts are so low and if infections persist.

I know this must be so hard and sad. I'm sure your mom appreciates the fact that you are there for her.

My heart goes out to you and your mom,
Joy

[herrera]

Re: Mom in hospice - is there really no more to do?

by herrera on Fri Jun 13, 2014 9:23 am

Hi Joy. Thank you for replying and your wishes for Mom and I. I want to wish you the best also and am sorry you are going through this as well. This disease is frustrating to me, I don't understand a lot of what the doctors are telling us. I try researching and end up more confused!

I was hoping someone could maybe help explain some of this for me but I guess no one else has been where we are. The doctor says Mom has a blood infection but from what I have read, that usually requires intensive care treatment and he sent her home, so I'm stumped as to what really is going on.

The nurse also mentioned a 'wet' tumor. I have no idea what that is either.

I live 2 hours away from Mom so it's hard to speak to her doctor myself. I just want to understand what is happening.

If I can be of any help to you please let me know.

[Beacon Staff]

Re: Mom in hospice - is there really no more to do?

by Beacon Staff on Fri Jun 13, 2014 9:38 pm

Hi Julie,

We're very, very sorry to hear about your mother's situation.

Joy has made some very helpful suggestions. We would just emphasize her point about seeking a second opinion, if that is feasible.

In particular, if your mother is being seen by a general hematologist/oncologist, or medical oncologist, and it's possible to get her to a myeloma specialist for a consultation, then you should really try to do this. In many cases, a myeloma specialist will be more likely to know how to address the challenges of your mother's situation, both by understanding her situation better and by being better aware of potential alternative treatment options.

If your mother is not being seen by a myeloma specialist, and you'd like help finding a treatment center where she could be seen by one, let us know where she is, and members of the forum can provide you with some suggestions.

All the best to you and, especially, your mother.

[Dr. Prashant Kapoor]

Re: Mom in hospice - is there really no more to do?

by Dr. Prashant Kapoor on Sat Jun 14, 2014 9:36 am

Julie,

I am sorry to hear about your mother's condition. I agree with the previous posts. Infections are common in patients with myeloma.

First and foremost, it is important to get all the facts about your mother's current clinical situation by having a detailed conversation with her physician. If, after speaking with her physician, you feel you need to seek additional help, it would be best to get an appointment with another myeloma expert.

A decision to transition to hospice is not an easy one and generally not taken unilaterally. All parties involved, including the patient, close family members/caregivers and physician(s) should be comfortable with the approach.

I wish your mother all the best.

[vicstir]

Re: Mom in hospice - is there really no more to do?

by vicstir on Mon Jun 16, 2014 3:15 am

Dear Herrera,

I have no medical advice or help. But it seems to me that if your mother is in a lot of pain and discomfort and as you also said been through so much already. Then maybe she doesn't want anymore miracles or fixes.

You also stated that your mother said, This is it. Maybe she has given up.

I know there will come a point in my own disease where I will say enough is enough. I will fight as long as I am mentally able because I have young children. For me personally it has been the mental side of things that are harder then the physical.

I guess what I'm trying to say is that your mum for all intents has fought for 12 years. That's a pretty good effort. I hope I last that long. I apologise if I seem heartless. I just think that your mum knows how much more she can take, so if she is not seeking further medical help / advise then you should respect that. After all only she knows how she feels and how much more she can take. It doesn't mean she loves you any less if she doesn't want to fight anymore. This is her journey.

Hope you understand what I am trying to say.

Yours Vic

[cindylouise]

Re: Mom in hospice - is there really no more to do?

by cindylouise on Mon Jun 16, 2014 6:08 am

I definitely think you need to have a very real talk with her doctor. If he truly believes she is beyond treatment then he needs to help all of you understand why that is. If there truly is no more that can be done, then definitely get hospice on board. The support of hospice will be invaluable to all of you. Best wishes to your mom and to your family.

[Terrilynnn]

Re: Mom in hospice - is there really no more to do?

by Terrilynnn on Fri Jun 20, 2014 2:38 pm

I am sorry to hear another warrior is suffering. I lost my husband to multiple myeloma one month ago. My biggest regret ... When he tried to say goodbye. instead of listening and just being with him during our last few days, saying to each other all those things that need to be said. I refused to accept it. I insisted they try more. I kept trying to get him to eat and drink. I just couldn't accept it. I thought my will will be done. I lost very valuable time with him. Because I was so scared to lose him.

I truly do hope your mom recovers. However, listen to her. Talk to her. If she has had enough, accept it and just enjoy 100% the time you do have.

[KimT]

Re: Mom in hospice - is there really no more to do?

by KimT on Fri Jun 20, 2014 6:05 pm

Terrilynn,

I want to remember what you said. I think I'm going to print it out. That part about spending the time saying what you need to say instead of pushing more care when it is time to stop.

I know you have regret but you may have helped a lot of people by saying this.

Thank you!