It Always Falls to One

“It Always Falls to One”

This is probably going to run long…but I feel compelled to write this. Many of my friends are major caregivers to their elderly parents. There is a saying out there in the world of family caregivers, “It always falls to one-others may do here and there, but the burden pretty much always falls to one.” I found this to be true in the years that I was taking care of Anita, my mom. I would be at the nursing facility and encounter many daughters (and some sons) that were ‘the one’. The one that shouldered most of the responsibility. The one that even prior to being in nursing care, was caring for their parent (and sometimes BOTH parents) at their parent’s home or maybe even in their own home, arranging doctor appointments, transporting them, keeping track of medications, following up when those meds weren’t delivered or available at the pharmacy, being the liaison to all the other family members every time there was an emergency hospital visit at godforsaken hours so everyone could feel in the loop and updated.

And those are the lucky ones.

More than a few of my friends’ parents are incontinent and they are literally wiping their parent’s asses, they are changing sheets often, they are washing them from head to toe because they are too weak to even attempt to do it themselves---or even remember to do it themselves. And when I tell you that can happen multiple times a day, I am sincere. They are dressing them and undressing them and everything that comes in between. And then there are the UTI’s-the Urinary Tract Infections that the person doesn’t even know they have-which goes into their brains and makes even the nicest of persons into the most crankiest, selfish, demanding, suspicious and antagonistic jerk of a parent. Hurtful things are said…and not even remembered by the person who said them, but felt like a 1-2 punch to the gut to the caregiver. You learn to suck it up and move on and later…..much later….you can laugh about it-maybe. 

Oh, and did I forget to tell you that my friends are working full time jobs? Yup. They are not retired yet. Some have the ability to work from home which is a Godsend. But others do not. And they are the ones on a weekly basis hoping that the fill in caregiver doesn’t call out, back out or get a better gig. When that happens, they scurry to find someone, anyone with a caring heart to fill in or they need to call out of work themselves. 

Why am I writing all of this? I really feel for my friends going through this-and there are MANY. It’s HARD. There are times you just want to go in the shower and cry your eyes out—from sadness, from frustration, from feeling like your own life is no longer your own (because it isn’t). No spur of the moment plans with ANYONE-EVER. Everything in your life is completely scheduled so you know that your loved one is being taken care of and not at risk.   The frustration often comes from feeling like you are doing it ALONE when there are other people who COULD DO SOMETHING—THEY COULD CONTRIBUTE but they don’t. Or if they do, it is few and far between. Or they give money, but don’t chip in with any of the work—the TIME that is involved.

When I was going through it with Anita, I rarely came right out and directly ASKED for help---ask for help? Don’t my siblings SEE that I am doing pretty much everything, that I am exhausted and feel like I have no life? How could they not? But I guess they didn’t. Or maybe as long as Cyn was taking care of things, they didn’t really have to truly think about it? Or maybe they were afraid of the situation and simply avoided it? But the truth is, I pretty much NEVER asked. Then it became an assumed situation-everything must be ok, because surely Cyn would let them know if it wasn’t, right? In the year before Anita went into the nursing facility, I started asking for help. It was HARD! Sometimes I wrote emails, other times I spoke directly. Each time, I rehearsed what I wanted to say—my heart was always in my stomach. My sibs stepped up—not as much as I would have liked and not nearly as much as I NEEDED, but they stepped up. I should have opened my mouth so much sooner.

All of this came up because of the many friends I have that are CURRENTLY enduring this-like on a daily basis. Yes, the coordination of taking care of a parent or parents DOES typically fall to one person. That person is the glue so all the pieces can be connected. It makes sense. But it doesn’t mean they should shoulder everything. And they shouldn’t HAVE to.

YOUR SIBLING/LOVED ONE NEEDS YOU AND THEY NEED YOU NOW!

If you are a sibling or a sibling-in-law or another relative or a friend, here’s what you can do to help:

• DIRECTLY ASK HOW YOU CAN HELP-OFFER AND FOLLOW UP
• This alone may be hard for your sibling to answer especially if they have been shouldering the bulk of the responsibility for a long time
• Make yourself available-take time off of YOUR job and take your parent to a doctor visit, bring in lunch/dinner and sit with your parent while your sib does whatever the heck they want during that time—and do this REGULARLY so they can count on personal time away on a regular basis
• Use YOUR vacation from YOUR job and stay with YOUR parent so your sibling can get some much needed respite-totally away and not called back ‘to the job’ for a week—don’t worry, your sib will make sure you have everything you need before s/he takes off
• ASK about how things are financially---more than a few of my friends are taking on financial responsibilities they shouldn’t be which will have long term consequences for their own retirement-it doesn’t mean you have to contribute, especially if you don’t have the means, but it may bring to light what is happening financially
• TELL them how much you appreciate what they are doing—this alone made me feel like at least my sibs knew and cared—it meant the world to me!
• Keep circling back! Put notes on your calendar to reach out, to offer, to DO. And then DO it! And then DO it again!

What I am hoping is that maybe people will see themselves in this post-either as the caregiver or someone that is connected to the caregiver---it may not even be right at this time---it might be in the future....people need help and while it seems like it would be so easy to ask, to say, 'I need you to contribute and to contribute regularly', it's not. At least for most. 

If you read all this way, thanks for sticking with me. And if you read this and are going through it, know how much you are in my heart---I see you and I am really proud of you. ♥

PS-to those of you taking care of your spouse or child right now, I see you, too. ♥

Love, Cyn