One of the most nefarious things about ALS is that it never stops progressing.  You can have periods of “same-time” but inevitably things begin to move again.  It’s very easy to let yourself get lulled into a sense of security in those times because, while the disease is still progressing, it is doing so slow enough that you don’t notice it much.

Then you realize one day in one fashion or another that it’s gone farther than you thought.

Monday we found out that mom’s breathing capacity is now under 60%.  The doctors told her to use her BiPAP machine all night, every night – in case she stops breathing or isn’t breathing enough, the device will help out.  She also has to completely change her diet to small bites, no pepper, nothing really dry, no bread, and lots of moisture, like really juicy meats.  Plus, she’d lost five pounds, which means that, if she loses much more, she may have to have a feeding tube to make sure she’s getting everything she needs.

I had just settled myself in with her giving up her walker in favor of using the motorized wheelchair all the time.  Now, once again, I have to practice what I preach, and that always annoys me.

The absolute worst thing about caregiving for your parent is not living in your mom’s house again, not no longer having a place of your own, not delaying something or even giving up part of a dream or two for later dates.  The worst thing, far and above any others, is watching your parent decline.

I remember my mom playing tennis.  She loved to hike and raft and drive.  She still “hikes,” albeit on wheels, but obviously that isn’t the same.  There’s just something particularly upsetting about losing your breathing ability and a lot of your favorite foods.

You never can tell how fast ALS will progress or in what order.  You just have to live with it and live your best.  The problem comes when I want mom to be able to live MY best, do all the things I can.  In those times I just have to relax, adjust and figure out how to run with new situations.  It’s part of the process, unfortunately, and it won’t be the last time we’ll have to do it.