Choosing to be a caregiver for someone will transform you in ways you never imagined.
One of those is understanding that this life, is really not about you.
I used to get frustrated at Steve when he wouldn't do something, I as a caregiver thought he should (ie: wash hair, bend knees, range of motion, etc). If you saw our documentary, you saw, I would equally get frustrated at Steve's desire to take medication for his undeniable pain.
I would get frustrated because I care so damn much about his well being that I want to do everything in my power to keep him as healthy as I possibly can. However, sometimes it's more than that. Sometimes I would get frustrated because other caregivers would make their comments to me, "Oh well my so and so doesn't take pain medicine." "My so and so doesn't stay in bed all day we always get them up." "My so and so can bend their knees..."
You get the point. I would allow the other people's comments on how they care for their person, make me feel like I wasn't doing a good enough job. I would get upset at myself and of course then get frustrated at Steve when he wouldn't let me do something I felt pressured to do.
Then one day Steve said something to me that helped me let go of the frustrations and the worry of what everyone else thought. He had wrote me a long message thanking me for taking care of him, and a sentence stuck with me forever, "Thanks for allowing me to live the life I choose to live with this awful disease and for standing by me every step of the way."
Even my stubborn ego can't deny that it's a beautiful thing to be able to do something for someone else; and even more beautiful to see a man who has lost control of the ability to do most things, still choose the life he wants to live.
See it's not about me, or what I think he should be doing. It's most certainly not about what others on the outside think we should be doing. It's about Steve. Always.
The reasons we can get along so well, and have so much joy in our lives; is the respect, love, and undestanding we have for one another. Steve will do certain things like let me wash his hair, do wound care, etc; because he wants to live and he knows as much as he doesn't want to, he must. The others, it's his choice. Because deep down how beautiful is it, that he still has that. His own choices.
ALS will never take that away, and I'm thankful for that.
Hope, i, too, struggle with these same issues with my brother. The best way I can describe it, is that I want him to fair the best as possible. I see so many others with ALS who are getting in their wheelchairs and go out in the world every day, on vents with their Eye Gaze computers. I keep questioning whats so different? I beat myself up over not being able to inspire him to engage in life more in any way that is possible. Oh, and you'll love this - I came to the conclusion that if he had a significant other, then he might be more motivated to enjoy whatever life he has left:/ So you have connected the dots for me. Its not about what I want for him. Its about how he wants to live, one day at a time. And because there's caretaking involved, there must be mutual respect and sometimes reasonable concessions. If I had to pinpoint one thing, I would say that my brother experiences quite a lot of pain. I really don't meet many who experience his same level of pain or as many infections. Maybe thats what the difference is. I guess that's also why there's no known Cause or Cure, it presents so differently in each person. With that said, I would like to comment to anyone who thinks you should/could be doing more - I'm happy they think they're having a better experience. Ironically, I find the love you show your husband and your endearing positive nature quite inspiring and I aspire to that every day :) Peace and Much love to you and Steve. Thank you for sharing and raising awareness 💖 Lori Markley
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