It's been two weeks since the oncologist said she had at most two months to live. I can see dark veins appear going up her torso toward her chest. Due to the doctor's assessment we were told to go to Hospice care despite having an appointment to see the oncologist out-patient to consult and start immunotherapy.
Now, a week later, she is barely communicative with 6mg Dilaudid at every couple hours or so and 200mcg Fentonyl. The staff is great, compassionate, but she looks SO MUCH WORSE here than she did before, as if we're speed running things. Her pain is unbelievable, searing her mind to just screaming, but at the hospital they didn't just stick to dilaudid. Her confusion and respiration is scary. She can't breathe well due to apnea already and the Hospice will NOT provide a C-pap or something to help her breathe despite so much pain meds making her literally heave for air amid her drowsiness. They also won't provide toradol which helped a lot and could diminish the dilaudid needed and fent.
I'm hoping to see what I can do over the phone and if I must see my mother die this week as the doctor suggested then fine, but I don't want to be responsible for making her suffer or losing a chance at better palliative care.
- I can pull her from hospice and bring her to the hospital but they won't provide the intensity of pain meds and she'll be in a horrible state. Plus immunotherapy is entirely out-patient so I couldn't get it started without a friggin appointment first! (It's Monday tomorrow and our appointment was for Wednesday).
- If I leave her here as-is she will definitely suffocate in her sleep at some point, unable to really communicate with me as I stay here with her, unable to attempt immunotherapy.
What would you do?
I am a retired RN. Were this me this is what I would want my child to do for me.
Hospice is already on board. I must assume, if your mother was able to discuss it, she welcomed it. They now need to DO THEIR JOB and give your mother comfort, even if it hastens her death.
This is no time to be considering more torment for her in treatment. That is my personal opinion despite her youth. I have to believe that Hospice didn't come on board when there was any real hope of recovery or wish to try for it by your mother.
I am dreadfully sorry for this for you, but moreso for your mother, who isn't being spared pain in the manner she should be by her hospice.
In this, too, I have to honor her wishes. So long as she has her mind, despite what the pain does to her, I can't go against her, and in a cruel way I am glad for her adamant decision on this because I can tell her I love her and she can smile even amid the moaning.
The hospice is doing better for her now that another doctor replaced the previous one. The situation is a living nightmare but they're doing better.
Thank you for your forceful empathy and consideration. I could feel your frustration for our sake. God bless you.
I wish you peace and acceptance, and the knowledge that you've been a wonderful son to your mother in her time of need.
I lived with and adored my mother, taking care of her every day for the last two years until now. We had been separated previously due to my Crohn's issue needing a doctor from NY (I still had NY Medicaid at the time) but I can be grateful for the time I had with her before this. Thank you.
I love her forever, and I know she loves me.
I went back 2 days later for the immunotherapy treatment and spent the next 2 weeks in bed with a fever of 102 and an unquenchable thirst. But I noticed the pain was gone within a week!
3 weeks later I went in for my 2nd infusion which left me very dizzy with vertigo, so I had to stop all immunotherapy at that point.
My PET scan the following month was clean. No evidence of cancer.
I've been cancer free for 11+ months now. 1 or 2 infusions worked for me. I can't say (nobody can) if immunotherapy will work for your mom, but the answer is definitely no if she doesn't try.
I know how hard and scary and terribly upsetting this is. I am sending you a hug and a prayer that you both have the courage to make the right decision for your mom, whatever that decision may be. God bless you both.
I don't understand. Every doctor I mention this to gets a pause like "Oh, she coulda done immunotherapy? Oh well..." and then tells me she's gonna die soon. The damnable state of things... If I had Bill Gates money I could hire oncologists to come to our house with hospice care and just do everything in-patient or something! All these doctors needing "appointments" she could never reach, and that she needs IV nutrition and the hospice won't give it since it's "life prolonging" or whatever...
Ultimately though she is coherent, despite moaning in pain whenever she is awake. I told her I would find a place, I'd do ANYTHING to get her somewhere that would consider in-patient immunotherapy with palliative care.
My mom doesn't want it. She is in so much pain and so tired, so deprived, but after struggling for so long in hospitals she finally told me recently to "let her go".
I have the legal authority, I have the love, but as much as it kills me and ends my world I also know that I don't have the right. I can't imagine what this pain of death is like. I don't count her a quitter, and I'm glad you didn't suggest such either.
I am mad with grief but I will remain at her side doing all I can until the end. I love my mother very much. I would have no family or friends if not for her. All I have is because of her. I would rather spend the rest of my life taking care of her rather than lose her, despite our faith in Christ and knowing her eternal happiness. She was never my burden, only my blessing. She says she knows this. She says she doesn't want to hurt anymore. I am broken, but what can I do? There is no miracle doctor willing to go out of their way for her and she has made her decision even before such a thing could be found.
Please value every day of your life. May God bless you. Listening to my mother's night pains scrapes my soul, but at least I also hear her sleep and dream, and when she awakes I am here for her. I don't know if that's a blessing or a trauma. All I know is that I am here for her to the end.
Thank you. ANd thank you ALL for posting and replying. I cannot fathom such a wonderful supportive forum. God bless all of you. Thank you so much. Even though we're just words on a screen, your comments and opinions have helped me not be alone. Thank you.
You can elect to discharge from Hospice, consult with the oncologist and make a decision from that point.
Your mother should NOT be in pain. If she is experiencing pain then Hospice needs to step up and try to alleviate the pain.
My heart goes out to you but I think from your description mom may be past the point where a curative treatment will "cure".
I also think that the treatments will cause her stress, pain for no good outcome.
Doctors want to push the treatments because they are taught to "cure" they do not know how to let a patient, a person die with peace. There is a lot to be said for the "quality" of life VS the "quantity" of life.
((hugs))
I will tell you right now, that I as an 81 year old woman facing down my second bout with the big C would haunt forever any child of mine that went against my wishes to be allowed my final exit from this life. I think it is cruel to do so. And I think it is cruel to argue it with your mother. She has already TOLD you her wishes. Please honor them without questioning and without argument.
People stay mired in woulda/shoulda/mighta in order to avoid the hard work of grief. That is now unavoidable. Please encourage hospice to medicate your mother below the level of pain and dreams and please support her wish for relief. WE ALL DIE. She is dying. Please support her without questioning.
My father was in hospice. I still gave him drinks and food because he wanted them. A person does not have to die of dehydration or starvation so as not to prolong their suffering. If your mom needs some oxygen they can give it to her. If that has to be done through the hospital she can go there.
If your mother has made a decision and is unable to communicate now, it's up to you to make sure it gets carried out.
You're not to blame for making her suffer or for depriving her a better chance at palliative care.
Your mother decided what she wants now. Is she a religious woman? Now would be the time to bring in some clergy of whatever faith you are so she can get right with God.
My friend, I've worked many hospice cases and this can be a real comfort to a person.
I am so sorry for your situation and I hope your mom goes in peace.
Is hospice not giving her oxygen? They should be and it is allowed.
May The Lord be with you during this difficult time and give you strength, guidance and peace. I am so sorry that your mom is dying so young.
Also, qualifying for immunotherapy requires a certain level of health, given what you describe I wonder if she would still qualify. Immunotherapy side effects can be brutal.
I know how difficult this is, I have done it but please honor your mother's wishes to to "let her go" she is being clear and direct with you. Please don't make her struggle further.