My MIL has Frontal lobe dysfunction, dementia and now a 2cm mass has been found in her right mid lung. Her Pulmonologist says she can not have surgery or chemo. Doesn't think radiation would be a good thing for her either. She is 85, sleeps about 20 hours a day, weak and unable to turn over in bed due to size and weakness. I am her only caregiver. My husband, her son, works 2 hours away so I am with her 24/7 except for 2 hrs Tues and Wed nights. I want to know for sure if she has cancer and her prognosis. Dr. treated me like I was being self centered to want an idea of whether she has a year or two or many more. Am I being self centered to know what is coming ?
Even if MIL could be anesthetized the trauma of such major surgery would take many months to recover from and probably include rehab so why put her through that for a definite diagnosis. Let her just be comfortable at home if that's possible for you to do. I don't think you need to consider changes at this point especially expensive alterations to the house. You will need extra help and some respite but i don't think you are looking at more than a few months.
A few more details, I am my MIL'S power of attorney. I take her to all of her appointments and I am listed on her HIPPA form. She is able to be up during the day but hasn't enough energy to do so. Once i get her up in the morning, she sits in her lift chair all day. Last night she slept all night for the first time in 3 weeks. Put her to bed at 9:30 pm & as of 9:20 am she is still asleep. Almost afraid to go check on her. The Pulmonologist did a Broncoscopy and sputum washings but they did not show anything. He said the mass is in the lung tissue. He said if she is already a hospice patient, that there is no need to do anything further, the dimintia will probably take her first. I don't know how he can say that. I've known people who live with Alzheimer's for 10 or more years. I am probably going to ask her GP to send her to an Oncologist as was suggested.
Thing is, if I'm looking at a year or 2, that's one thing but if its going to be longer, I need to make some changes.
I just want what's best for both of us.
Not that I'm defending the pulmonologist, but perhaps he/she is adamantly abiding by HIPAA if there's none on file allowing you to have access to MIL's medical information. Did you accompany her to the doctor? In my experience, that's always been enough to discuss the issues, but perhaps this doctor doesn't feel that way.
Has any of the family been designated as authorized under HIPAA to get information?
It isn't being self centered to want to know the prognosis - it's insightful and wise, so that life going forward can be planned to address existing situations and potential contingencies.
You are not wrong to want to know if she has cancer. There is a fairly simple test, but it would require she be anesthetized. He may not want to do that. If it was cancer, radiation could be a possibility, but I don't know if you want to go through that with her health being what it is. There are so many choices.
There is often no good or reliable answer to these questions, but it is very human and understandable to have them.
If MIL is bed-bound, unable to turn herself, and sleeps most of the day, I wonder if this would be a good time to consider custodial care for her. A nursing home would see to it she was turned frequently, day and night, and spare her the pain of bedsores. She may be at the point of needing 3 shifts of strong, well-rested people to keep her comfortable. You could visit often.
Even without the possibility of cancer, if she is sleeping 20 hours a day, it may be time for hospice care for her dementia. This could be provided in a nursing home or at your home.
I am very sorry for this sad time in MIL's life, and its impact on you and your husband. I assure you, wishing you knew more is not at all selfish.
Perhaps the next professions you should ask for an evaluation is your local hospice organization.
Come back and keep us informed. We care!