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?
First, I just want to send all my love to you and your family.
My mom was just released from the hospital 4 days ago with terminal metastatic colon cancer. She was first admitted New Year’s Eve because she could not stop vomiting. The doctors placed a naso gastric tube to help empty her stomach and a parasentisis to help clear her ascites. The initial plan was to get her strong enough so she could go back on chemo, but after a couple of weeks, her doctor said that she was not strong enough and discontinued chemo treatment. Her oncologist says that she’s not a candidate for immunotherapy; and my family and I continue to wonder whether or not we should seek a second opinion, but we don’t want to put my mom through more hell.
She was in the hospital for 44 days, dealing with a naso gastric tube that is emptying the contents of her stomach that causes her incredible pain in her throat and made it very difficult for home health companies to want to take her due to the inexperience with this naso gastric pump (which now my family and I have become pros in) as well as the risks of aspiration and infection.
Unfortunately her surgeon informed us that she was not a candidate for a gastric bag due to her distended intestines and ascites. So after WEEKS of waiting for our hospital to provide us with a naso gastric pump, that helps keep her from vomiting, we finally were able to find a hospice that would take her.
Right now, she is on a hybrid mix of palliative and hospice care and is receiving TPN, but it took FOREVER for us to find a home health company that would take my mom’s case with the naso gastric tube and the TPN. Most of these companies seem to not want to offer TPN for terminal cancer patients as they think it’s just prolonging life, or that it’s pointless and I also am not surprised to learn that there is no financial benefit to them to offer it in these cases.
My family and I have been going back and forth deciding whether or not we should go for a second opinion. Right now, my mom is still lucid and her pain is fairly manageable and coming mostly from her tailbone pressure wound she got in the hospital and of course the occasional surges of pain and discomfort from her cancer that, for the time being, seems to come and then go quickly. My mom is avoiding taking the morphine and Ativan hospice has provided, and absolutely does not want to die. The fear and anxiety is tremendous.
I write all this to share my compassion with you and tell you that you and your family and your beautiful mother are not alone. I believe that all we can do is ask our loved one who is suffering what they want and continue to check in with them as their condition changes. In my opinion, once the physical suffering and pain becomes so great, we have to push tooth and nail to get hospice to provide more powerful pain medications and do THEIR job! You do have the right to switch hospices at any time.
This cancer is a NASTY and painful disease. I am continuously shocked everyday by just what exactly is going on in my mom’s body and all I want for her is to have peace and comfort.
I’m hoping that while my mom’s pain is still manageable and she is still lucid that she can speak with her therapist and maybe an end of life doula/specialist about her fears and anxieties around death.
i don’t know about you, but this whole experience has taught me to plan my own death the best that I can, and begin the work now considering end of life wishes as well as my relationship to death. It breaks my heart to see my mom experiencing so much anxiety and fear and though I know this is totally normal and I’m SURE I will feel the same way when it is my time, I just hope that I can have some sort of plan in place to help guide me and my mom through these fears.
Finally, our healthcare system in the US is total sh*t. I can go on and on. My mom’s hospital appealed to Medicare to stop covering her hospital stay b/c she is terminal. disugsting
The very best any of us can do is to be present for our loved ones and minimize their suffering. You are doing both. I hope you have some support for your grief.
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.
As of now the hospice, with the new doctor, is being gentle and attentive to my mother. It is hard for me to watch this unfold as I am living here in the room with her as the process proceeds until she is inevitably passing. My emotional state aside, I acknowledge that were it not for the magnitude of the medications she would be in horrific agony, and thankfully the new doctor has sorted the medications such that they are continual, effective and keeping her comfortable until I am forced to say goodbye.
I know of hospice horror stories, of patients being drugged to death etc etc But I saw it first-hand that my mother literally cannot be awake for long without the pain of death ruining her. I saw it myself, every day, how the staff NEEDED to increase the dose of dilaudid to try and chase the pain. The new doctor was wiser and suggested adding Benodryl or something to amplify it's effectiveness. It works. However without any of this my mother would just exist in suffering. And her breathing is better on this combo of meds, too, it seems.
Thank you for caring enough to want to get a clearer picture of things. Thank all of you and God bless you. As stated before, my mother's condition has declined rapidly, faster than doctors expected, and while she was still able to speak she reassured me and held me to a promise of this: let me go, and don't let me suffer as I go.
I am keeping that promise. I am encouraged by all of you here, both with forceful concern and tender sentiment.
Thank you.
My mom is also receiving benzodiazepines (minor tranquilizers) for her breathlessness and resulting anxiety. She is still coherent because she is not at the end of life yet. However, when the suffering gets too great, I was promised that mom would be given a high enough dose that she would basically be asleep through it an not suffer.
I know this is a different situation, and idk if you have fully made the decision about immunotherapy. But if your mom is not going to be receiving anymore curative treatments and she is at the end of life, I would insist that they give her enough pain and anxiety meds so that she does not suffer. That is the whole point of palliative care and hospice. God bless you.
God bless you, sincerely. The difference in our situation doesn't compare to the exact same pain of loss we endure. Thank you for replying.
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.
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.
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))
Fentanyl was okay at first, methadone has done better.
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.
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.
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.
Morphine is supposed to help people breath better as well, so talk to your moms hospice nurse about that too.
The purpose of hospice is to keep someone as comfortable and pain free as possible until they die, so if they're not doing that, call whoever you have to to make sure your mom can die in peace.
You can also ask to have your mom brought to the hospice home where they will be able to administer stronger medications to allow her to die in peace. The hospice homes are beautiful and peaceful and if mom dies within the week, Medicare covers all costs 100%.
It's only if your mom would linger on longer than a week that you would then have to pay out of pocket for her to stay there.
I'm sorry that you're losing your mom at such a young age, but at this point I don't believe there's any going back now.
May God bless you and keep both you and your mom.
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.
EDIT 2: One of the nurses, a charge nurse, came in with a rebreather. She says if it does not work then she will begin the arduous process of getting a cpap or bipap or something. She actually did something thankfully. Very sweet woman. Unlike the doctor.
Still, the dilaudid is what's causing the confusion and dangerous breathing. She NEEDS pain meds but like this? And I'm still uncertain if we can't do immunotherapy... It was her last and only chance