Mom is in denial about her prognosis
My mom has been in Assisted Living for about three months. She is not happy there, but she has never been happy anywhere. At least she is safer than she was in her home. As predicted by many on this forum, it took a crisis to get her moved out of her house, but I suspected it was coming, and we had visited ALs together about 6 weeks before she ended up in the Emergency Department, followed by a month of rehab. My mom (78) is in terrible shape physically. She has Sjogren's-related Interstitial Lung Disease, and is constantly breathless. She wakes up every morning in a panic because she can't breathe. She also has Spinal Stenosis in her neck, and extreme arthritis in her hips. She is not a candidate for surgery because of her lung condition. She is in immense pain, and has been told that she will ultimately lose her ability to walk if she lives long enough for her Stenosis to progress that far. Her only treatment options for her neck and hips are strong pain medications and possibly steroid injections. At this point, she struggles to sign her name because of nerve impingement, and since her rehab stay in May 2026, she uses a walker, very breathlessly. In mid-July, she was asked by her Pulmonologist's PA if she was interested in Palliative Care or Hospice, and she decided on Palliative Care, but is now questioning that decision, as she feels her doctors have "given up on her" because of it. When she was in the Emergency Department for 4 days (they wouldn't admit her to the hospital b/c her condition wasn't considered 'acute,' and I told them she was not safe to return home since she couldn't stand/walk and had no one to care for her - it was the weekend, so she couldn't be admitted to rehab immediately), she was prescribed 5mg Oxycodone every four hours, plus fentanyl and ketamine while she was there. Since beginning Palliative Care, her Oxycondone has been decreased to once per day, and she has a weekly transdermal patch of buprenorphine, plus Xtra strength Tylenol 3 times/day. She saw her Pulmonologist on 8/18, and he made some changes to her medications after seeing the results of her breathing tests. He called me yesterday to explain his decision to take her off CellCept, an immune suppressant, which was meant to slow the progression of her ILD, and to simplify her nebulizing meds. She is shocked that his visit notes include an instruction to let her Palliative Care team know when she is ready to transition to Hospice. I asked him if he thought it was reasonable to expect that she might die within 6 months, and he said that it would indeed be reasonable to expect that. The CellCept regimen caused her extreme anxiety (a constant issue at any rate), and she is glad to stop taking it, but after two days with fewer nebulizing meds, she feels her breathing is much worse. She thinks her doctor is trying to kill her, essentially, because she has opted for Palliative Care, so why bother with her? She is obsessed with the idea of outliving her cat, who is 8 years old. She truly believes that she has more than 5 years left to live, and is mostly regretting many of her decisions, including the decision to move to AL. She says she'd be ok with dying if she got to have some fun first, and she feels trapped in AL with people who complain all the time. I would love for her to be able to let go of her many MANY anxieties and spend her remaining time enjoying whatever is left for her to enjoy, but she seems determined to worry and feel abandoned, and to struggle against reality at any cost. I realize that she could live much longer than 6 months, but her doctor was so grave when delivering those words to me, and she is truly so frail (103lbs) and suffering so much. Has anyone had a similar experience and have any advice? I just don't know how to help her face the truth and take advantage of the potential comfort she might gain from Hospice care.
And yet you too are suffering from compassion fatigue please do not feed into her feelings. I wonder if you could benefit from grief counselling. You are not doing anything wrong.
I hadn’t thought of grief counseling for myself. I have never been the kind of daughter my mom wanted (submissive and ‘sweet’ in a specific Southern way), so she tends to assume I don’t really love her, but am only being dutiful, which she says to hurt my feelings. Maybe I have absorbed that message too much, and haven’t felt that I really deserve to grieve.
Thank you for saying that I’m not doing anything wrong. I really am doing my best, but it doesn’t feel like enough.
I'm so sorry you and your Mom have to go through this. May you receive great wisdom and peace in your heart on this journey.
I’ll see what I can find out about that. I do think it would comfort her.
Thanks so much for the suggestion.
At that point, dad went to hospice. We never communicated with whatever doc hospice had, just the nurse that came out to set a Foley catheter on him. When he failed to do it, my sister had to step in. Yeah, she’s a doc, but her specialty is ovarian cancer and this was my father’s penis. As to what comfort meds were to be given, we just talked to her.
My late husband was under hospice care in our home for the last 22 months of his life and he started on morphine when his pain got bad and then graduated to heavy doses of fentanyl to try and keep his pain under control and both are highly addictive, but hospice or palliative care does not care as their purpose is to keep their patients as pain free and comfortable as possible until they die.
My husband also was prescribed antibiotics at least 3 times that I can remember by hospice when they thought he had an infection or UTI, so what you said was very wrong about them withholding antibiotics.
I'm sorry that your experience with palliative care sucked. You should have fired them and brought another agency on board as most are quite wonderful.
My mother once insisted, for a 6 month period, that she had a "horrible rash" under her breasts. Nothing was there. The poor PA tried everything, to no avail. So one day I brought over a can of Dermaplast to her in AL. I sprayed the numbing spray on the "affected area" and she felt relief. From that day forward, the goal was to keep her from being hysterical. That's all. Her antidepressant was increased to the max and some of the complaining and fear was reduced. The rest I took with a grain of salt.
That's not to say your mother isn't justified in feeling afraid at reaching the end of her life. Its just the theory that everyone is out to get her and that line of conspiratorial thinking that's driving her fear. Anxiety meds and antidepressants can change a person's thinking somewhat and bring relief to all concerned.
Wishing you and mom the best of luck as you navigate this difficult situation.
PS: My mother also fought off sleep and insisted on being active, even when she was wheelchair bound! This personality type is VERY tough to get thru to.....my condolences.
I haven’t known anyone else who took CellCept for non-transplant reasons. It was insane the convoluted ways she tried to make sure her stomach was empty to take it & schedule the rest of her meds and nebulizers. Alarms at 3am, etc. I am relieved she can let that one go, at least.
I think she would have more access to pain management if she agreed to Hospice, but she isn’t ready for that, it seems. As for sleep, oh how I wish! She has always resisted sleep, and now she is taking Lasix (she has CHF also), so she is up frequently in the night and often doesn’t sleep at all. I’m pretty sure her chronic lack of sleep has contributed to every problem she is currently facing.
You are right that reality is coming whether she faces it or not. I guess it’s up to me to make peace with her decisions. It’s hard to see how little I can help.