A couple months ago, I took these pictures of Evie providing
care for Jeff when she participated in “take your child to work day” for
school. She stayed home from class that day, and together we took care of Dad. We
made and fed him breakfast. We did breathing treatments, and trach care, and
changed the circuits on his ventilator. She even watched me change the dreaded
colostomy bag – because the stark reality of caregiving is often having to do a
lot of yucky things.
Evie has taken part in Jeff’s care since the beginning – that’s just kind of how it is when you have a family member that requires 24/7 assistance. As she’s gotten older, she’s been able to understand and handle more complicated tasks. And aside from a couple more intimate tasks like changing a catheter or cleaning certain areas of the body, she’s helped or at least watched me do almost everything there is to take care of her dad.
We’ve never hidden what is involved in taking care of Jeff
from her – and that’s partly because she’s the closest thing to a backup
caregiver that we’ve got.
As a solo caregiver to someone who needs full assistance,
one of my biggest caregiving fears – besides something bad happening to Jeff –
is something happening to me where I’m not able to care for him.
I haven’t been feeling the best lately. And it’s gotten to
the point where I need to seek medical advice. From my symptoms and the
research we’ve done, we think there might be something amiss with my
gallbladder, but without medical tests we can’t know for sure. Jeff and I have
been trying to approach this with a level head – which can be tough sometimes
when we get caught up in “what if” scenarios. We’re hopeful that the pain can
be alleviated with minimal time away for me. But we have to be prepared for me
to be away for more than a few hours should I end up needing surgery.
And thus why the concept of a backup caregiver has been on
my mind lately.
But here’s the hard truth about that: In family caregiving situations
like ours, there are no understudies. No one waiting in the wings who is
shadowing me. No one fully trained to provide the detailed, complex care I
perform every day. So the thought of me being out of commission is terrifying.
Yes, we have our amazing 10-year-old daughter who has
stepped up to the plate and has proverbially hit it out of the park with her
competence in the tasks she’s learned and performed. But full-time caregiving
brings with it a weight of responsibility that is not fair for a young child to
shoulder.
We’ve reached out to Jeff’s parents for additional help above
and beyond what they already provide for us. I’ve trained them in some more
in-depth tasks that will help keep Jeff healthy and thriving should they need
to step in for me.
I really hope it won’t come to that. Honestly, we’re all
hoping it won’t come to that. But being prepared is just another aspect of what
being an effective caregiver is all about.
So I will say with honesty that the day Evie stayed home to
help take care of Jeff, I had more on my agenda than just “showing” her what I
do all day. I made her do tasks herself, even when she was hesitant or a little
nervous. Because that’s how I was taught. And the only way we master is by
getting in there and doing it.
Ask any caregiver for a wish to be granted, and I can
guarantee the majority of them would wish for the same thing: a clone. But
since reality hasn’t caught up with science fiction yet, the next best thing is
our back up.
And right now, Evie’s okay with being the backup. In fact, she
takes pride in it. There’s not a lot of other kids her age who have the knowledge
and skill she does when it comes to taking care of another human being.
She’s got a big role to play in our family. We depend on her
– sometimes heavily – to handle some pretty complex tasks. And she does an
incredible job.
She’s one amazing backup.
