I had a bit of a revelation today about how the husband's current state mirrors my mother's experience with her illness/cancer. When my mom finally accepted her diagnosis of the rare and terminal peritoneal mesothelioma she went to 2 doctors. Once was at Sloan Kettering, because SLOAN, so naturally... and that doctor told her, it was not curable and with her other health issues her best bet was to not treat it and enjoy her time left which he estimated at 18 months. My mom, the fighter, did not like his answer. I remember the day she came back to my house after that appointment. She was pissed. The next doctor was trying very hard to treat and extend lives for patients with this insidious cancer and he gave her the false hope of the possibility of living 5 or even 10 more years with treatment. This doctor was telling mom exactly what she wanted to hear.
The surgery to remove as much of the cancer as they could and implant the chemo ports was horrific beyond imagination, but mom, the tough broad she was made it through and fought her way back. Then, as soon as she was healed enough came the chemo. Now most patients, stopped by in the morning for their chemo and went on their way, back to work and the rest of their lives, or to the airport to fly home, and never even had an issue with it. My mom was not so lucky, my mom would start puking before she even made it to the curb to get into my car. She'd sometimes puke for hours and be miserable and in pain for days. She was in and out of congestive heart failure and also her kidney function began to decline until they couldn't treat her anymore. She was in and out of the hospital. A month or two after they stopped treatment for the cancer she was in total kidney failure and on dialysis, which was also brutal as they could never seem to get her fluid levels just right. My poor mom, pushed valiantly through the last 6 months of her life, she suffered the symptoms of her cancer, she spent half her time in the chair getting dialysis half putting on a brave (and by brave, I mean, a full face of makeup, dressed to the nines, looking as sharp as she could because that was how she rolled) face. She was so weak that a trip to the supermarket was all she could do for the day. An outing for lunch and she was done in, but she looked fantastic!
In the end her heart just couldn't support her sick body anymore. She lived for a long and painful and grueling year after those consultations. Mom needed to fight. I know she needed to feel like she wasn't just accepting her death. But I wonder. Would she have had 18 months if she hadn't fought? Would she have had a better year? Would she and Dad have had more time together? Made it almost to their lives ends side by side? I wonder.
I feel like I am right back in that time where one doctor says he can help and the other is saying, just accept the diagnosis and make the best of what you have left. Should I encourage the husband to charge forward with surgeries and implants and devices and experimental medications knowing there are big risks to all of this and no guarantees? Or should I encourage him to accept what time he has left and help him enjoy it? (Ice cream sundaes every day!) We don't even know why this is happening to him. Is it genetic? (I think it is) Worst case of diabetes related illnesses ever? Depression and sleep apnea combining for total body disaster? No one knows for sure, so how am I supposed to do the right thing here?
Also, the husband's situation is different than my mom's. Mom was still mom and her choice was what she needed to do. I'm wondering what the ethical thing to do is when there is dementia involved and the choice today might not match the choice my fully functioning husband would have pre-made for himself if he had known.
WHERE IS MY CRYSTAL BALL??? Dammit