Sunday, September 29, 2019

Caregivers: We Can Do Hard Things (but Don’t Have to All the Time)

I fell in love with this sign: “I CAN DO HARD THINGS.” Yes! I can do hard things! I am proud of myself for doing hard things!

I found it while organizing an office move. This is one of my specialties – I’ve worked at just a few law firms but have been in charge of at least half a dozen moves. This last big move involved more than 60 people, half of whom are timekeepers – meaning their time is what pays our bills. Getting them to take time out of their already busy and stressful days to prepare for an office move requires a little bit of begging, cheerleading, humor, my best impression of a drill sergeant and a whole lot of rolling up my sleeves to help.

In other words, it is hard work. But I CAN DO HARD THINGS!

Other Brother’s words of wisdom ring in my ears when I am doing these hard things: work smarter, not harder. (To his credit, Other Brother works both smart and hard!) I understand the meaning behind these words: be efficient! Between checklists, spreadsheets, team building and timelines, the moves are stressful but I have earned the trust of partners and staff alike to get us moved and up and running on schedule. So, yeah, I am working smarter but it is still HARD.

Caregiving is like that too.

Caregivers CAN DO HARD THINGS! I work hard every single day at keeping Robert well. I work hard to make sure Robert has the best treatment plan for his epilepsy. I work hard to help him keep as mobile as possible for as long as possible. I make hard decisions about Robert’s health care multiple times a day. When Robert was hospitalized for the gazillionth time for aspiration pneumonia I refused a doctor’s recommendation of a feeding tube for Robert.

Why? Because one of Robert’s greatest joys in life is eating! Even if he can continue to eat a little something with a feeding tube, I just cannot take one of his joys away from him. Hearing the doctor – a doctor who had never met Robert before in his life – explain to me the dire consequences of me declining the feeding tube was HARD. I could tell he thought I was supposed to feel a little guilty about this decision. Maybe even that I should realize what he was saying was “for the best.”

Standing up to the doctor and repeating my refusal of the feeding tube was even harder than the actual decision but I had no problem doing it. I stood up a little straighter, looked him in the eye and told him I knew it was the right choice for Robert. (I had other doctors come in a little later to tell me they supported my decision and, of course, Robert’s regular team of doctors agreed with my decision.) Robert will continue to aspirate and get pneumonia but he can aspirate on saliva during a seizure so a feeding tube will not completely eliminate the risk.  

So, yes, caregivers CAN DO HARD THINGS and we do them every damn day!

This is why I have a love/hate relationship with this sign that alternates between hanging in my closet and sitting on a shelf underneath some scarves.

I can do hard things. I can work smarter. Sometimes, though, I (and probably millions of other caregivers like me) just want to take a little break. Let’s ease up on the hard work that we know needs to be done and that we know we can do. We need to be gentle with ourselves, pat ourselves on the back for a job well done, for working our butts off to keep our loved one alive and happy and joyful for as long as we possibly can.

And we need to work as fiercely hard for ourselves as we do for others. For me, that means taking 20 minutes to walk. That means ordering take-out instead of making dinner. That means getting a pedicure with my daughter or taking a respite with my husband or, sometimes even, just not worrying about my to-do list.

I CAN DO HARD THINGS but I don’t have to do them all the time.

And neither do you.

Take your break. Be gentle with yourself. Do not let the guilt creep in; instead, feel your own joy. Set aside that to-do list. Breathe.

Then go back to doing those hard things that are inevitable but do them with renewed energy and peace.

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