Caregiving isn’t just about me asking someone to help me with a specific task and then we do it. That is part of it and that is how caregiving begins. But caregiving done well goes further.

At the end of June, I wrote about the controversial book, Me Before You. The overall book saddened me because the author chose to address a person’s right to assisted suicide. Terrible. I do not agree with that choice, that route. Every life is worthy and good can be found. Once again, it is back to perspective.

How does one with limitations see their days?

What story do they see playing out before them?

Who is helping them to overcome limits?

Who is helping them to be normal?

The caregivers. These are the people behind the scenes, right in the middle of every day. They are the first ones to be the hands and feet to those needing the care.

Family members often play a huge role in caregiving. Then it extends outward because the family needs support as well. They can’t always be the main ones doing the “work”. Parents need breaks. The people with the limitations, like myself, need breaks, but we also need that sense of independence.

So, a caregiver beyond the family could be a personal care attendant (PCA), a certified nurse aide (CNA), or a person who has a passion for caring. They come to your home for a certain amount of time daily, weekly, etc.

I watched two movies this summer that offered positive stories about characters with physical disabilities — The Fundamentals of Caring and The Intouchables. Both addressed the good side of caregiving. Both are worth watching.

As I constantly need the presence of a caregiver, I appreciate when unspoken goals are met.

  1. Learn what I like. Learn my routine, my rhythm, my preferences.
  2. Respect my way of doing things and don’t try to fix the process (unless I ask).
  3. Help me to be as independent as possible, even if it’s emotional independence.

A physical disability always requires hands-on help. I can’t get away from that fact. And the characters in the other two movies couldn’t either. But really good caregivers are tremendous gifts.

When someone begins to know me, to understand how I do stuff and how I structure my days, then I feel independent. With independence comes freedom to live well.

And as I live well, I feel normal.


Next week I’m sharing a real-life story of caregiving in action.

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