Caregivers Need Their Own Resolutions for the New Year

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by Annie Dixon |

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It’s that time of year when we resolve to improve ourselves and our lives. Ubiquitous articles and television segments offer advice to the masses as we embark on an annual fresh start. Everyone is encouraged to strive for perfection, get in shape, make time for themselves, get organized, take risks, and do all things in moderation. That’s hard enough for the young, healthy, and single to sort out and stick to. For us caregivers to family members with rare diseases, it’s downright impractical and annoying.

This is the start of the sixth year since the onset of my husband’s atypical hemolytic uremic syndrome (aHUS). I am already procrastinating on committing to Dry January. Seems as good a time as any to pour the last of the champagne and suggest some counterintuitive resolutions for caregivers.

Lower your standards (and accept the shape you’re in).

Caregiving requires multitasking for at least two lives, neither of which will be perfect. This is not a vocation for overachievers; those who can prioritize are better suited to this role. Healthy people are more important than tidy houses or brilliant careers. And sometimes, getting the patient to sleep through the night is the best thing you will do all day.

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Being responsible for someone else’s health goals can affect your own. Maybe you’ve put on a few pounds since becoming a caregiver. Those are called reserves, and you may need them the next time your patient’s condition requires you to skip a meal. British nutrition labels kindly note calories as energy, so keep a pack of McVitie’s cookies on hand and know that you are prepping for a low-energy day.

Choose ‘we’ over ‘me’ time (and be disorganized about it).

Sharing a life with someone who lives with a serious illness makes time together more precious. It’s OK to drop or postpone your individual ambitions, or to pursue them in smaller doses closer to home. And while nursing time necessarily increases your time together, quality time requires choosing to share books, movies, music, conversation, and laughter.

In addition to scheduling time together, caregivers and patients should embrace spontaneity. Take the long way home from the doctor appointment, just for a change of scenery. Let a sleepless night lead to a midnight snack and an old movie. Taking control of the inconveniences of illness can lessen their ability to discourage, and can even turn them into unexpected joys.

Don’t take risks (but enjoy the occasional excess).

When you are responsible for someone else’s health, you have to take care of your own. This is not the time to take up skydiving or even to skip your vitamins. Your physical health is as important as your patient’s.

And everyone’s emotional health is important, too. So enjoy together whatever vices are still possible. Celebrations aren’t just for holidays; indulge in little joys from time to time. Have seconds, have dessert, wash it down with a bit of bubbly (nonalcoholic, if necessary), binge-watch a series, have people over to your messy house.

Seize the day — or the night — and make this the happiest and healthiest year you can. Cheers!

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Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.

Comments

Kevin Edwards avatar

Kevin Edwards

I've been struggling with the anxiety not knowing whether I'm losing my mind or not my health isn't the greatest I don't know just having kids with my ex girlfriend ...I feel like every time try to reach out to her I just push her away further away I'd like to salvage your friendship I don't think I'll ever be possible it'd be nice though

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