Hi, Vitsra.
I have not been on this forum since 2018 -- can't imagine what happened since we continue to deal with this awful disease. Slow progression does not seem like much of a gift -- more like pulling the wings of a fly. I also faced his desperate search for a cure or a "way out" -- stem cells, IV antibiotics for 8 months in case it was Lymes, IVIg for three years despite relentless decline, supplements and more supplements...) Some of the options seemed reasonable, others crazy, almost all quite expensive! No lack of snake oil salesmen to exploit the desperate.
Of course any objections like "How do you know that's safe?" or "But we don't have enough to pay the rent" are signs of pessimism and disloyalty. And I have to say anyone who lives this path as a caregiver must be forgiven for thinking, "Wait? Do we actually WANT this to go on LONGER?" Yes, there are inspiring stories of people who transcend this illness and feel satisfied and fulfilled despite the limitations -- truly extraordinary. But my experience has been one of rage, "I hate my life," refusing small comforts offered (has not been out of our tiny NYC walkup for years despite a crew of people willing to carry him downstairs to sit in the sun for a bit), friends and family rebuffed ("Why would I want to see those photos? I can't ski anymore!" or "Who cares you lost your job? At least you don't have ALS!").
I don't mean to sound cavalier -- I appreciate, of course, that his rage and demands and lack of empathy for others are not entirely his "fault" -- partly the disease itself they say, combined with the very human fear of dying and profound, progressive loss of control. Awful. But it is a grueling challenge to be in the line of fire, as caregivers are.
Regarding the advance directives, I worried about this for a very long time, but eventually told him clearly what I would do as long as he did not have one. So, "If you do not have a DNR, and go into cardiac or respiratory arrest, the only appropriate choice is for me to call 911. They will do CPR, defibrillate, intubate -- whatever the situation demands. If this is NOT what you want, you should make that clear in legal document -- I will not accept the responsibility of allowing your life to end when your choices so far have been to try to prolong it." I followed up by communicating this with his (supportive) family.
Things like the g-tube didn't feel as urgent because they don't require split-second decisions. He eventually chose the PEG during yet another hospitalization for aspiration pneumonia, and it seemed appropriate to me since he still had some function and feeding him had become unbearably worrisome as he choked and spluttered with every bite.
One last tip that has helped me immensely -- I started to consciously seek things to be grateful for. I made it a physical project -- got a bowl from the cabinet, put in strips of blank paper and a few pens, and started writing down the good things that happened. Like when my caregiver brought me tulips for Mothers Day! Or my sullen, 18 year old daughter spoke comforting words to her dad. Sometimes I put in several strips a week, sometimes I forget for months! But it is full now, and the practice has made the little bright spots easier to notice. Helps keep perspective.