spinal muscular atrophy caregiver

Dany S.

Mom

Caregiver fatigue: the importance of taking care of ourselves

When was the last time you did something just for yourself? Something that really gave you a few moments (at least) to refresh your energy and focus on something other than your child(ren)?

12/2017

I will be the first to admit that taking care of myself is not something I tend to do well. Between full-time work, a family at home, helping at our church, running a side business, volunteering in the SMA community, and still seeing friends from time to time, I very often forget to do the things I love, the things that bring me joy.

My older child, Ruby, was almost six before I started to get back to doing this. Six! Within the last few months, I have been more aware of the importance to take some time away from the kids, even if it’s just setting time aside at the end of a long day to read a couple chapters of a book in silence. When we become parents, our priorities shift, as is expected. Add on being parents to a child (or in my case, two children) who need a significant amount of physical support and you will likely kiss your weekend dates and opportunities to sleep more than 4 hours in a row (on a good night!) goodbye for the foreseeable future. And the difficult thing about life with a child with SMA is that as they get older, they very often are not getting more independent. Quite the contrary, they are often becoming more dependent on others as their muscles weaken.

I have to make adjustments to what “me-time” I can actually take advantage of depending on what age or developmental phase the kids are going through and how they are doing health-wise. But these are a few of the tips/strategies that I’ve implemented that have helped and maybe they can help you, too!

Vacation or get away with family or friends who know your kids. We’ve gone on several vacations with family and aside from it being a blast to vacation together, it’s also fun to get to swap kids and have extra help! My husband and I have gotten to sneak away for a quick dinner together while on vacation when we’ve been able to leave the kids with trusted family. Likewise, we can then take on some babysitting duties so our family members can head off on their own for a bit. It works for everyone and gives us a brief chance to catch our breath during a usually busy vacation.

I mentioned this before but taking care of yourself doesn’t mean that you have to leave the house. If it’s not a good time for you or your child, watch a movie in your room with the door closed (bonus points if you act like you’re not home at all!) while your child is watched by a friend or family member.

Many days, I’m exhausted by the time the kids fall asleep and it takes all my energy to just get to my bed to pass out. But a couple times a week, I use a half hour to an hour to watch a TV show I’ve been trying to catch up on or write a letter to a friend.

If you have a partner, do whatever you have to do to find quality time to be with him or her and see them as just that—your partner, not your roommate or the other caregiver of your child. It is so easy to get lost in the day-to-day routines that our kids need to have in place and let our relationships slip away from us. Just tonight, my husband told me goofy, lame jokes after the kids fell asleep and while I was getting ready for bed. We giggled and I was reminded of how good we are together, parental and SMA duties aside.

Ask for help—a friend, a family member, a nurse, whoever. Ask. We cannot do this all on our own. Nor should we have to. If you can’t trust others to care for your child, ask for help with household tasks or other errands so that you can then free up some time at home for you to do something for yourself. I’ve found that people really do want to help and while asking might be hard, it’s so important.

I believe that we can’t give what we don’t have. So in order to care for our children the best, we have to remember to care for ourselves, as well.

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