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Cj90jc Asked February 2013

How do you prepare for cognitive decline and the beyond?

Hi. My Mom has breast, lung and brain cancer and I am her primary caregiver.

She has had two bouts of pneumonia - both resulting in trips to the ER. On the second trip (just this weekend), she experienced a marked change in her cognitive abilities. She went from being responsive to basic commands and generally polite to confused, angry and mean-spirited towards me (and even the nurse). I thought this could have been a reaction to the antibiotic that she received, but the doctors said that was not the case (though when I read the medication warnings, increased confusion was one of them).

I also learned that the cancer in her lungs have spread and that she has lesions on her spine (in addition to breast tumors and brain lesions). I do not know her prognosis (have not spoken to her doctor), but obviously, she is not getting better.

She still lives at home (and I live with her), but setting aside the effects of the pneumonia and fever, her hygiene has deteriorated, she expresses intentions to do things - clean a room, drive her car, go to a store - but does not/cannot make an effort to do them due to extreme fatigue.

My questions: She absolutely hates it when I speak to her doctors - this sets her off more than anything - but I need to understand what stage she is in so that I can prepare emotionally and operationally for what is coming. Should I call them in confidence? I think they would understand and not share with my Mom that I called. (I have medical POA).

What can I read to prepare for what may come as her condition worsens? (though I pray that her doctors can stop the spread, but this latest news was a real blow).

What should I absolutely be sure to ask her / take care of before the confusion advances? (I have legal paperwork taken care of for the most part - there is one last document I need to get her to sign this week).

She is super-sensitive to talking about the future and does not like it when I bring it up. Should I wait for her to do so?

Finally, I am thinking about bringing in a home health care aide/nurse soon so that Mom gets to know and trust them if her condition worsens (and so that I have someone to help me manage through this). Does it makes sense to do this or should I focus instead on finding a facility (e.g., hospice care)? She would not want to leave her home, but it may come to a place where I cannot care for her.

Thanks everyone for your thoughts.

Grace

NancyH Feb 2013
Grace, gee I'm sorry about your mom. My mother died in 2011 of cancer, so I get it. With mom, my dad called in hospice about 3 months or so before she died. They were wonderful. I know some people have an issue with hospice, but we sure didn't. They took care of all her meds with her doctor, so we didn't have to do anything except call the nurse in, she'd look mom over and see what we were concerned about, then call the doctor and they'd work it out with whatever medication she might need. We went with a private company hospice instead of the county or state or whatever they usually use. Medicare still paid like usual, so no big deal. When we knew she was going to need a hospital bed, they brought it in and set it up for us. Along with anything else we needed. My mother was resistant to use the marijuana pills that we wanted her to try for the pain and lack of appetite, but her doctor told us we could have anything we wanted for her pain. She was just too stubborn to try those stinkin' pills. ha Oh well... Basically with cancer, the person dies of malnutrition in the end. With mom, food had no taste so her appetite went down the crapper from there. Eventually she even refused water. We thanked God that she had only stopped drinking for a day or so before she died. So I guess I'd say, get whatever legal stuff you need to get done. Ask your mom if you can talk to her doctor about her. You don't have to get too specific as to what you want to talk about, just tell her you need to talk about her care. I can't help you if your mom is in denial about dying, that's too bad in my opinion. That stops you from getting closer to each other in the days, weeks, months she has left. With us, we as a family were with my mom constantly almost from the time we found out that the cancer she had been trying to fight with surgery, was going to kill her. I have no regrets, and neither do my siblings or mom's grandkids. Sorry.

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