Continued from Part 1: In some cases, being invisible has tremendous benefits….[it] is like having a superpower…until you need to be seen, until you need your hard-earned knowledge and skills and expertise and grey hairs recognized….Invisibility is a wonderful thing — as long as we don’t lose sight of ourselves in the process.  

We forget that parts of us can become invisible but it’s happened to every one of us.  We forget because who we think we are changes especially when we’re called on to care for someone else or adjust to a new health situation.  It doesn’t mean those parts have disappeared but it can be easy for certain parts to become invisible to others. When we’re trying to adjust to a “new” self, it’s like trying to get our feet under us again and we simply can forget who we are….until you run face-first into this invisibility which I did rather recently.

When families are caring for someone who is living with a complicated medical situation, the supplies to care for that person are expensive.  Extremely. Ostomy supplies, special tubes and tape for ports, even incontinence products can rack up hundreds of dollars in out-of-pocket costs.  Some of these supplies are covered by insurance but if there’s a delay in coverage or approval, the family is often subjected to purchasing supplies privately.  Then a client’s situation can change which means that the supplies change… which leads to a surplus of supplies that cannot be returned. They’ve either been paid for by insurance or, often, the family has enough medical paperwork to manage without having to try to find a receipt and return four boxes of nitrile gloves, several bottles of senokot, pepto-bismol and a scale to Walgreens.  Which was how I ended up with 14 cases of vanilla-flavored nutritional formula — sustenance for people with a G-tube — in the back of my car.

Knowing that a case of this formula can run approximately $185, a family whose care situation had changed asked if I could find someone who would appreciate the extra cases they could no longer use.  Insurance could not take them back, and if they were bought outside of insurance, where the receipts were was anyone’s guess. So I agreed to find them a home, over $2600 of liquid nutrition. What I failed to realize was that agencies serving people who have a G-tube cannot accept this as a donation because it’s considered a prescription.  It wasn’t like an extra walker that I could just drop off at a medical equipment closet. This “prescription” clause knocked out about 90% of my ideas for how to donate the stuff. Then I realized I knew another family who cared for someone with a G-tube — puttin’ the pieces together!  I decided to call them up.

“Morning,” I said when they answered the phone, excited to tell them my big find.  “I know this is random but Michaela has a G-tube and you guys use the supplemental formula, right?…”

The mom confirmed that, yes, her daughter still used the formula, in fact the exact same brand — and it was very expensive.  

“Well, I was calling because I have 14 cases in the back of my car and I wondered if it was something you guys could use.”  I was thinking in my head (which I should know better than to do), this is going to make their DAY!

“Oh, that’s cool,” said the mom.  

“Do you want it?”

“Mmm….it’s vanilla-flavored?”

“Uh-huh.”

“Oh….well, that’s really nice of you but Michaela only likes banana creme….”

Now, unless you’ve known someone who eats through a G-tube where the formula goes straight into the stomach, you wouldn’t know that you also can taste food even if it bypasses your mouth.  It’s incredible. And! you wouldn’t know how expensive it is. And you definitely wouldn’t turn down 14 cases of the stuff because it was the wrong flavor. But you sure can do that and this mom did, in spite of both she and her daughter being on Medicaid.  

I ran face-first into invisibility and this is where I commend the mom.  When we experience a challenge, sometimes it’s easy for us to become invisible in terms of what we want or need.  Challenges run the gamut. It could be caring for someone who has memory loss and having to stay home more because that person can no longer leave.  It could be enduring the healing process after a surgery and needing someone to help you. Or it could be living on disability income with Medicaid providers coming into your home to care for you, including help with a G-tube.  All these things can make parts of you invisible, especially to others and, unfortunately, even to ourselves.  

Take being the care partner to someone with dementia.  You run the risk of becoming invisible to yourself if all of your energy goes into being the brains for two people — the cooking, the cleaning, keeping the person occupied with something that’s stimulating but setting them up for success with something they like to do….there’s just not enough brain to go around!  And at the same time, it takes cojones to stay connected to others and not lose yourself.  When it comes to healing after a surgery which can take way more time for our bodies than for our brains, others may think they can make up their own schedules of when they care for us.  The part of us waiting around for their help feels invisible, searching for the words to say this gives the impression that their time is more valuable than our own. Then try being low on the socioeconomic scale — the right to choose what you don’t want can definitely go unseen.  Unless you are not invisible to yourself and know enough to say what won’t work for you, like the mom did with the formula.  

It is so easy to lose ourselves by adjusting to what someone (or society) thinks we should do.  A dear friend calls it “shoulding” on yourself and makes a point to set up a “should-free” zone where she can calmly ask herself if she wants to be limited or limitless.  Because it’s choice that makes us human — that’s the pickle — whether someone agrees with what we choose or not. When we give ourselves choice, we stay visible.  

Next week: What does it take to stay visible to ourselves?

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Western Care Partners guides families and individuals through the maze of resources and emotions that come with getting older or having a chronic condition.  We screen for services, facilitate decisions and provide counseling to support you through the difficult situation of needing more help. Call or send us an email for more information: 720-675-9902 or www.westerncarepartners.com.

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