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My mom just started hospice on Saturday, my mom and my sister and uncle decided it would be good since she had respiratory failure three times since October and she doesn't want to be intubated anymore.


Right now I'm worried about her oxygen while she sleeps with the trilogy ventilator. It's supposed to help with the COPD and retaining c02, but the past few nights her oxygen has been getting in the low 70s. I called the hospice nurse and she said as long as my mom seems comfortable and is relaxed and is sleeping well that I shouldn't worry about the numbers, and that it's the natural progressing of the disease. But I checked on her again and it was down to 55 and I really don't know what to do! Should I call the hospice nurse again? I woke my mom up and it went back up but only to 62 and then took the trilogy mask off and out the regular oxygen/cannula and now is staying in the upper 80s lower 90s range, but she isn't supposed to sleep without the trilogy because of the retaining c02.


I just don't know why in the past few days her oxygen is getting so low while sleeping/using the trilogy ventilator.


I'm scared to sleep when her oxygen is getting so low, and scared I'll wake up and find her with respiratory failure again.

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🤗🤗🤗I think that the core problem is that you haven't internalized the reality of where your mother is in her life journey. Hospice is about keeping someone comfortable in their final months, weeks, days and it sounds as though your mother isn't feeling any discomfort from the low oxygen levels. I would ask to chat with the nurse and perhaps the social worker about what is likely to happen next and what you need to do in any of the scenarios you are having difficulty navigating.
If it were me I would toss the pulse ox away and stop focusing on numbers that at this point aren't really helpful. At some point we all have to face the reality that life is finite and nothing we can do will alter that fact, the best we can hope for is to make the end chapter as easy as possible.
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You have seen the progression in the past which have led to ventilators. As the decision is now made not to prolong this agony with such actions, at some point the numbers will fall low enough that instead of a ventilator, death will occur. Meanwhile, to drive yourself absolutely mad with the numbers is only going to drive you absolutely mad. The numbers that you you or for me would mean we were about to die are numbers in terms of saturation that people with chronic COPD have adapted to. That said, the acceptance of hospice does acknowledge that the end is near if not imminent. The final stages will end in respiratory failure. Continue to take your concerns to Hospice and continue to take their advice and counsel. What you feel, what you see, what you are acknowledging with the O2 sats are what is true. Your mother is in the final stages now, and the outcome will be her passing. Please now concentrate only on your Mother's comfort. I am so sorry for this coming loss, and sorry for your discomfort and anxiety. Continue to keep close touch with your hospice who knows your Mom and her case better than any of us can know it.
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Honestly, you’re staring at the numbers too much. It’s an easy habit to fall into, but also one that will drive you batty. We have a pulse ox for my son, for years his doctors were against us having one at home, their position being that we’d obsess over the numbers. We rarely get it out in order to avoid that. We’ve seen the 70’s even the 50’s with our son, it’s disconcerting to say the least. But your mother is on hospice, the nurse will recognize and help you recognize distress, and then meds will ease that distress. It’s not fun to watch, but is the natural course of life. My dad’s hospice nurse guided my through his need for more help and the meds. There was a world of wisdom in what she knew, rely on yours for guidance and step away from the numbers so much. I know it’s hard and I wish you peace
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Speak with hospice. I am hopeful that you already understand that death may be imminent for your Mom, and that you have been able to discuss with family and with the doctor this important fact. Hospice is end of life care. You Hospice is responsible now to give medications to prevent your loved one from having anxiety and air hunger issues, even if that medication may cause death by some hours, days, weeks before it would happen without the medication. It is now about comfort care, not O2 levels. It is about not prolonging life, but about making the remaining hours, days or weeks comfortable. Speak with doctor and hospice about expectations, prognosis. I am so sorry you are facing this grief and loss and wish you the best.
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Kruss1 May 2021
Thank you, I have been a CNA for 10 years and a CMT for almost 9. However, I began doing at home care for my mom 2 years ago when her health really went down hill and she had to quit working, and in the long term care I have never dealt with a trilogy machine before. I am also frustrated with the doctors because they don't always listen to me but I think they will start listening with all her recent ER trips, or at least I hope so. After taking her again to the ER this morning I had a respiratory therapist come to our home to check all the equipment and see how she is doing. They are requesting for a new order for the trilogy and a hospital bed. I have made an appointment to discuss exactly what part of her stage 4 COPD my mom is at and see what our options are, which I plan to ask about hospice. If she is at that stage for hospice I would feel a lot better about everything. I appreciate the support and I am glad I found this website.
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Good advice and Alva is a Nurse. So she will correct me if I am wrong.

Its my understanding that there comes a point that no matter how much you raise the oxygen levels, it will no longer work. Her lungs are just not able to get the oxygen thru her system. So, she will go into respiratory failure, its inevitable. You call the Nurse, someone should be on call 24/7. Morphine is usually given to ease the breathing.

I am so sorry you are going thru this.
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When my father was in his last days on Earth with hospice, he was taking about 2 breaths per minute vs. the normal 12-16 a healthy person takes. I found myself obsessing over it, listening to him breathe, counting the time on my watch between breaths, then holding MY breath to 'see what it felt like' not to breathe for a full 40 seconds. It became such torture for me that I had to leave the room.

I realized then that I was fighting off the fact that my father was living his last couple of days of life; that's what it looked like, that's what it felt like, and I was witnessing the minutiae of it. What was I expecting, exactly? I realized, too, that he wasn't suffering, thanks to hospice and the medication the nurse was giving him. I was the one who was suffering, as you are doing right now.

When we hire hospice we decide to let nature take its course and to allow our loved ones to die when their body's are too tired to go on living. We have to accept that and know they're not in pain or suffering, just that their journey here on Earth is coming to an end. It's hard and it's gut wrenching, but it's the cycle of life, and there's nothing we can do to stop it or change it. But we CAN take care of ourselves and not watch every moment through a magnifying glass, you know? That's when it all becomes too much and we're ready to break down ourselves.

Have faith; in God, in hospice and in the knowledge that your dear mom will pass when He is ready to take her home where she will be whole once again. Wishing you strength and peace during a very difficult time.
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I don't mean to piggy back but my mom is going through close to the same stuff. However she is not on hospice. I'm at a loss on what to do. She goes into the hospital and they take a night to get her back to her normal levels but that only lasts a week and she is right back to the same thing.
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