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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 ?

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You are taking such good care of MIL. If she is already sleeping 20 hours a day and is unable to move independently it sound as though she has begun her final journey. No one can tell you how long that will be but the experienced hospice nurse will have a very good idea so at least call them in for an evaluation and take it from there. You don't need a Dr's order to contact hospice but if you go that route he does have to approve it.
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.
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This website has been so much help. I feel like there is always someone who understands what is going on.
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.
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Sometimes "tumors" or lesions in the lungs are Not Cancer, but are inflamed lymph nodes. There are several ways to determine if the lesion is Cancer, that are not nesssarily that uncomfortable to the patient, or require heavy anesthesia. A Broncoscopy requires some light sedation, with a spray that numbs the nasal passage and throat, the scope is flexible and is passed down into the lung via the nose or throat, and the Dr can obtain a biopsy sample this way, another test involves doing testing on the sputum. There definitely are more invasive tests that may be nessesary depending on if they feel she is physically capable to manage them. Other tests like MRI, or CT scan, plus bone scans can look further into the possibility of a Cancer spreading. Knowing how if its Cancer and how advanced it might be, would allow the patient options, or just the knowledge to make informed decisions regarding the disease, and a possible timeline, and the ways to make her comfortable going forward. It may be that you wish to not go forward, and just monitor her symptoms, but at least you would be understanding of all of the options, and possibly a prognosis. I definitely recommend she see a Pulmonary Specialist. So sorry this is happening at such a time where she is weak and feeble. Believe me, I've been through many of these scenarios with my own parents, but knowing the options is better than not knowing, in my opinion. Remember to take care of you, this is already difficult times for you and your family also. If Hospice does come up, please don't wait, having the extra support the entire Hospice team, makes life easier for you and the patient. This can be in your home or in a facility. My Mom had Hospice in my sisters home for 5 1/2 months, before entering a Hospice specific Hospital setting for the last 8 days of her life. They were incredibly helpful for her and our family. Take care!
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Fixer, has MIL seen an oncologist? I think that would be a good way of confirming the operability or not of the tumor.

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.
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I would start with making sure YOU have the legal right to be kept in the loop with everything medical pertaining to your mother-in-law. When it fell to me, and at the time my sister-in-law to take care of our mother-in-law, that was the first thing we did. With my father-in-law recently dead, and our husbands working she and I were elected to step in and take care of her. We had no idea at the time she was showing sign of Alzheimers since my father-in-law had covered for her dwindling memory. I took her to most of her doctor appts. and before she lost her brain altogether, she had made sure it was in her records that both my sister-in-law and I had full rights to know what any results and/or ANYTHING medical pertaining to her was. Tell your husband he needs to get on that if he expects YOU to be hands on with HIS mother.
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No, you were not being self centered. I understand that he didn't want to put her under anesthesia in her condition, but he could still provide some type of prognosis so that you could plan for her care and your life. The doctor was remiss, probably because he didn't know. You observe her more than he does, so you may have a better idea. It does sound she requires a lot of help, so I hope you're able to get more help in so you can take long breaks.

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.
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Well, if wanting to know what is coming is self-centered, you are in very good company! Nearly all caregivers want to know what are the stages of their loved one's disease, where is their loved one on the timeline, what can we expect next, etc.

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!
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