... what details you planned for you and your kids to survive afterwards?
These are my experiences to show how a CALS can plan and succeed through ALS.
First, before the illness, I realized that my wife was our primary income provider, so I made my smartest move by insuring her to the maximum. All our lives we think insurance is not needed, but fortunately, I worked out the cost versus benefits, and insured her, just a few months before the diagnosis.
When Krissy was diagnosed. I researched ALS and how to care for paralyzed people and suicide and the laws about keeping your job while taking emergency leave. I made a detailed budget to ensure I could live without my wife's income.
I made good relationships with a couple of bankers, so I could get practical advice from them.
We made every effort to live life as normally as possible, going to events, dinners, games, etc. Unknown to my PALS, I always had equipment and paperwork nearby in case of emergency. We had to go to the ER twice for breathing issues and called the EMT's once to pick us up off the floor. I always kept my cell phone charged and in my pocket.
Of course, there were legal documents like Wills and Advanced Directives to attend to. And there were Social Security benefits and veteran's benefits (Krissy was a veteran).
We were also in debt and in danger of being sued. So we set up the life insurance money to go into a trust fund for the kids, so my hands never touched it. The Trustee would take care of our kids financial needs, but the money would not be mine. This protected the money from any lawsuit against Krissy or me.
My first really surprising realization was, "Holy Cow! Girls are waaay different than boys! How can I raise a girl without a mother? So I worked out to have as much female presence in her life as possible: a church, teachers, doctors, girl scouts, and family visits.
(The church was a mistake. It turned out to be what Americans call Evangelical Fundamentalist. They convinced my little girl that mommy was going to Hell because she didn't have enough faith to cure her ALS.)
I realized that my kids needed to be busily involved with their mother, so they could process her illness and death more completely. So over time I trained them to do different caregiving tasks. They helped mom by mixing medications, feeding her, using the cough assist machine, providing oxygen and air, massaging her feet, adjusting her in the hospital bed, and operating the patient lift.
During mom's illness and afterward, I wanted my kids to have a normal social life. So I made sure they continued with their friends and teams. (I should have paid more attention to the friends from church, and should have yanked her out of there.)
While Krissy was sick, I insisted that my son get his driver's license so he could help out the family more. I did more chores than ever, and modified our rented house (with a saw and a sledgehammer) to accommodate the wheelchair. I apologized to the landlady later.
At school, I should have told the teachers that mom was terminally ill. I was initially afraid of calling attention to her, but now I think her grades would have been better if the teachers knew what was going on. When the kids didn't want to go to school, I didn't give them a hard time. They needed a break just like I did.
We always planned on college for the kids. So I found scholarships for them. We encouraged our kids to apply to big-name schools. We toured some nice campuses, and the kids became excited and motivated to improve their grades.
After Krissy died, I introduced my children to therapists, but the therapists said no sessions were needed. They were fine.
Travel was an important part of my life with Krissy, and I knew she would insist on the kids seeing the world as we had done. So during the holidays after our PALS died, we went to Europe. I brought along the kids' girlfriends to ensure it would be a fun trip for them. This helped tremendously. I took the kids overseas for the first two Christmases.
With the insurance money, the Trust bought a new house in a different neighborhood. Unfortunately, my girl had to change schools, and that impacted her grades, activities, and social life greatly. I failed to double check where the school district draws the line between neighborhoods.
I gave away our equipment, bed, lift, wheelchair and such, to other PALS. I get the kids involved in charity work from time to time.
My son had a steady girlfriend who was quite good for him, so I include her in family things.
Whenever I suspected my daughter was depressed, I arranged for something exciting like go-karts or a flight lesson. I encourage her projects: last year she built a canoe and now she's talking about building a sailboat.
I decided to get a new career. (I'm retired military.) So I went to school for healthcare administration, but dropped out from boredom. I then trained in helicopters, but my blood pressure failed the flight physical. Not sure what I'll do next.
Recently, the Trust gave me the house and is paying for the kids to go to college. And although I'm a homebody, I know my kids love activity, so I taught them how to scuba dive and we are taking a cruise for the New Year.
So that's all the planning and activity that has gone into our lives to ensure my family stayed well even after ALS.