We all say things that come out different than we had
intended. “I’m worried about you” sometimes comes out as “Boy, do you look
tired!” Everyone does it but caregivers probably hear more than their fair
share of ill-advised comments from good-intentioned people.
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| Trish, Robert and Richard |
Robert is sick right now and, like many caregivers, I keep
family and friends up to date on how he’s doing through this blog but also on
Facebook, Twitter and Instagram. Robert always gives me a big smile when I take
his picture and then loves it when I tell him everyone on the computer is
wishing him well and thinking about him.
He’s a big ham that way.
I love the comments and support, too. It is comforting to
know so many people love Robert and want him to be his excellent self all of
the time.
Every now and then, though, a comment slips through that is
well-intentioned but makes me bristle. One of my most favorite extended
relatives made such a comment and I know he didn’t mean anything by it. He’s
got a huge heart and kind of took us three “kids” under his wing once our dad
passed away a few years ago. I love him to pieces.
I really think his question deserves an answer, though.
“What Would You Do Without Taking Care of Robert?”
I know I am not the only caregiver to be asked this question
so let me take a minute to tell you.
I couldn’t respond right away because I was giving Robert
his medications and starting his nebulizer so his airway would open up a bit
tonight and, oh yeah, I had to put his oxygen on him since his wheezing is loud
enough to hear in the next room, but here’s your answer:
If I wasn’t caring for Robert, I would get a good night’s
sleep. I wouldn’t need to wake up every four hours to take his vitals when he
is sick. I don’t even need an alarm to wake up through the night – the worry
about sepsis is enough to keep me in a light sleep until it is time to check
his temperature and pulse rate. Even when he is “well” I have to wake up at
5:30 a.m. to give him his medications. A good night’s sleep is a luxury for
caregivers.
If I wasn’t caring for Robert, I would be able to work a
full week without taking time off for doctor’s appointments, physical therapy
appointments and meetings at his Day Program or with his social worker.
If I wasn’t caring for Robert, I would have a lot more
money. The briefs we get through his Medicaid? They’re fine for an hour or so
but Robert needs more protection than that. We buy him heavy duty briefs so he doesn’t
leak through to his clothes when we go out or at Day Program. We buy wipes for
bathroom clean-up and gloves for the same purpose. We go through laundry soap
like it’s water and, speaking of water, we go through a lot of that too because
of the five or so loads of laundry we do every day. He is on a lot of
over-the-counter medications which are not paid for by insurance or Medicaid
but they are essential to his well-being. Regular dental visits keep pneumonia
at bay so we pay for those too. Robert’s social security helps pay for some
things but, believe me, I am not coming out ahead when it comes to his
expenses.
If I wasn’t caring for Robert, I would visit the ocean with
my husband! Sure, we can take Robert on vacation with us (and have – our
Disneyland trips are amazing and memorable and I wouldn’t trade them for
anything). Occasionally, it would be nice to go away with just my husband
though. Respite care for someone that needs as much care as Robert is tough to
come by.
If I wasn’t caring for Robert, I probably wouldn’t feel like
Norm from Cheers every time I walk into the pharmacy. Between prescriptions and
over-the-counter meds, Robert takes 41 pills a day. Forty. One. That’s sixteen
different medications that I keep track of because he cannot go one day without
any of them.
If I wasn’t caring for Robert, I might have more intimacy
with my husband. Sorry to get personal but sheesh, you asked the question. It
is not easy to have the energy for extracurricular activities when I am
exhausted by the end of the day. I’m lucky to stay awake for a mindless crime
drama or two. Sometimes I cannot even watch shows that require a little brain
power because my mind just can’t think about one more thing.
If I wasn’t caring for Robert, I would write more! The
topics I write about are usually related to caregiving so I would probably have
to start writing about cats or something but at least I would be writing.
Writing feeds my soul so I know I would definitely write.
Don’t misunderstand me. I love caring for Robert and I know
this is a choice Richard and I made. We do not regret it for a minute. I am
grateful that I have been able to get to know Robert more than I ever did when
we were younger. I am grateful for Robert for teaching me to enjoy simple
things in life and to laugh about silly things. I am grateful for Robert’s
smile and his ability to declare everything excellent and my food delicious
(even when I know better).
I am honored to care for Robert.
But is there anything that I would do if I wasn’t caring for
Robert?
You better believe it.
