Young Caregiver? You Have Options.

It's very hard to expect that you will lose a parent or even grandparent when they are well north of 65, only to find out that their years are suddenly numbered.

You can do this. You can do much more than you ever imagined. And one way or the other, you will. Even if you only do a few fly-ins with your family member, you will ultimately mourn them. So the question is, how do you want to remember the years that they had with ALS?

Now, the tough part. ALS sucks. We're not promised happiness, nor tomorrow. If you don't think you can deal, you are probably wrong. If you don't want to deal, well, who does? But it's an investment, not just in someone else's comfort, but in your own life.

I call it lending your best self to your family for a few months or years — not because you want to or have to, but because you need to.

You can run. You can't hide. Maybe you haven't had the parenting you wanted or thought you deserved. Whether that qualifies as a pretext not to be a primary caregiver is strictly up to you.

If your family relationships have been dysfunctional and you don't think they can take the stress of ALS, try it and see before you bail. Sometimes, a sell-by date brings out the best in people; sometimes, it's the opposite.

Many young CALS have had very few interactions with the health care system. But you are still as qualified as the next person to look up resources on line, compare and contrast options, ask questions like "What is the next step?" and "What are the alternatives?"

It sounds bizarre, but the "what's to be done, what are the benefits, what are the risks" questions that you would ask about your dog, cat, or fish are pretty similar to the ones you ask about your mom and dad.

You're also probably pretty good (or know someone who is) at fixing things, kludging solutions, putting a cushion here and a hook there.

It's all about balancing quality and quantity of life, until you can't. Then, it's time to help someone take the exit ramp with grace.