I have time.
My wife died nearly five years ago, so I have the rest of my life.
I’ll give my view as a caregiving husband and father.
Then I’ll PM to you what I think my wife would have said, if she could, because the view from inside the head of a person at the end of ALS should not be shared openly without preparing the reader.
Over the years of listening to hundreds of people with ALS, I’ve learned that, at some point in their journey, dying people become highly focused. They often turn inward, and sometimes shut out their families. Sometimes their preoccupation with fear and sadness makes it impossible for them to smile for their grandchildren.
Somebody once said, “Nothing so focuses the mind as knowing you’re to be hanged in the morning.”
How did your worldview change?
College plans, retirement plans, tomorrow’s appointments, tonight’s dinner—none of that matters. What matters is right now. Is my wife able to breathe? Is she in pain? I need to move her legs so the joints don’t get painful.
When faced with a task—any task, like reaching your finger inside her anus to remove a turd—you don’t think it’s gross, don’t wonder if you’re prepared, smart enough, or strong enough; you just do it. Doesn’t matter if you can or cannot do something; you just do what needs to be done.
I stopped judging people. You don’t know where they’ve been, what they’ve done or seen. And like the flip of a switch, they—or you—could be dead tomorrow. Life’s too short to place expectations on it.
For some families with ALS, they get isolated. Friends don't know how to treat you when you're headed down this road. So usually they ignore you. Even relatives will refuse to see you anymore. They're much too uncomfortable.
Are you able to communicate effectively with the technology given?
When she was bed bound, she played with speaking through the computer that is controlled by eye-gaze. But soon, that was too much effort. So she became quiet and I was the one who occasionally spoke while holding her hand. I told her she had raised two outstanding kids. In emergencies, I held up a letter board and looked for any indication that I was pointing at the right letter. I still smile and giggle a little when I remember her last words to me: I-T-C-H-B-U-T-T.
Has your nuclear family become stronger after diagnosis?
Absolutely, yes. Once the time was right to tell the children, we engaged them in all the daily chores and taught them how to handle the equipment for breathing emergencies. The kids, 13 and 15, crushed pills, mixed meds with applesauce or coke, and fed mom. They each could roll mom over, use the patient lift, and transport mom to the bathroom.
It’s physically and mentally exhausting when you have to maintain two lives, and one of them can’t scratch an itch, can’t reposition a foot, can’t blink often enough to keep the eyes from getting painfully dry. 24/7, for the rest of her life.
Some families are destroyed. Sometimes spouses just pack up and leave, rather than care for a person with ALS. Financially, the disease is devastating.
After Krissy died, I gave the kids some slack on attending school when they just wanted to stay in bed. Then I took us—and their girlfriends—on a European vacation as a way of resetting our group dynamic, marking a new beginning, and showing them it was OK to be happy again. Of course, this is expensive. But I figured that restarting the new family was that important.
ClassClown, the very first thing I thought when you posted this was, “What a stupid choice for a screen name. You’re looking for deadly serious answers on a sensitive subject, but you introduced yourself with a joke.” Learn from that.
Most importantly, my life became truly happy again. I remember my wife, I respect her memory. We gave her a helluva funeral. But now the sad memories are easily processed and my days and nights are filled with the fun and excitement of my earlier adult years.
So there's hope. For the survivor.
More “interesting” tidbits by PM.