The Other Side of the Ice Bucket Challenge–Caring for the Caregivers

ALS caring for the caregivers

The Ice Bucket Challenge…it gives me chills thinking about it.  Not for the thought of the freezing cold water splashing down my neck. I get chills because I’m thrilled there is more awareness being spread for such a terrible disease, ALS (Lou Gehrig’s Disease).

I have a personal story related to ALS.  My Uncle Michael died from this disease 10 years ago.  He is probably one of the greatest men I will ever know.  He was kind, generous, thoughtful, faithful, and devoted.  He served in the US Air Force until he was required to take a medical retirement.

As an example of his devotion, whenever someone asked how long he and his wife had been married, he replied, “Not long enough.”

ALS not married long enough

He was the kind of uncle that would tease (only in the fun way), and watch out for us.  I remember the advice he gave me before I left on my mission for my church.  I knew I wouldn’t see him again in this life, but his parting words (through the computer) were, “Remember, you can kiss one time on your mission.”  The punch line quickly followed, “Then they send you home.”  Even as we were saying goodbye he was lightening the mood, sharing some fun and helping me realize the dedication I needed to have.  *Missionaries for The Church of Jesus Christ of Latter-day Saints abstain from dating during the time they are serving the Lord, missionaries aren’t allowed any time alone with a member of the opposite sex.

But this post isn’t about my uncle.  It’s about my aunt, and my mom, and my other family members who were there to help as he struggled and fought through the end of his life.

I’m grateful there has been more awareness of the disease, but I want to highlight the stress, both physical and emotional, for the caregivers.  ALS, especially in the last stages, requires 24/7 care, many times replacing catheter bags, filling feeding tubes, and other unpleasant tasks.

I’m sure Pete Frates wife would have many experiences to share about how her life has changed because of this disease.

ALS isn’t the only disease that requires 24/7 care.  It isn’t the only time a caregiver goes through extreme amounts of stress.  It just happens to be in the media spotlight right now, so let’s continue the highlight and share some ways to help relieve some of the stress associated with caring for a loved one who needs constant care.

1. Ask for help

So many times (especially as women) we feel weak if we ask for help.  Unfortunately, none of us are superheroes yet, so we will need help.  I have yet to meet a person who doesn’t need at least 6 hours of sleep on most nights.  This just isn’t possible when you are caring for someone who needs 24/7 care.  My aunt asked for help from family and neighbors.  Those who volunteered were trained in suctioning the tracheotomy and helping my uncle breathe more easily.  These tasks needed to be completed every other hour, and my aunt would not have been able to do this on her own.

2. Give up the guilt trip

You don’t have time to take a vacation, so don’t pack your bags for a guilt trip either.  You didn’t cause the disease, you can’t stop living, the best thing you can do is remain positive, and that is usually incongruous with guilt.

3. Take some time for yourself

Yeah, I’m not talking about a trip to Hawaii or anything, but it will be beneficial to take some time to unwind away from the stress.  You’ve already stopped feeling guilty about needing some alone time (see #2), so go get a massage or a pedicure, or just go to the bookstore and browse for a while.  This will allow you to feel more refreshed when you return.

4. Find your faith

I don’t want to get super preachy here, but I know this is one area my aunt would certainly touch on.  Focus on what you believe and cling to it.  One of my church leaders said, “There are no atheists in fox holes.”  If you look for strength from a higher power, you will find it.

5. Enjoy the good times

They might be few and far between, but enjoy them when they happen.  Take some time to remember these good times.  Write them down in a journal, take pictures, laugh.  Taking the time to remember these good moments will help pull you through the rough times, and it will provide happy times to look back on.

We recognize that there are thousands suffering with diseases, and the stress associated with caring for loved ones who are ill.

We hope that this ALS Ice Bucket Challenge will help make everyone aware of the needs of others around you.   Take some time to help lift another’s burden.

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About Anne Banks

Hi, I'm Anne! I am an active learner on this crazy road called life. I love learning about anything, but currently spend most of my study time researching parenting tips and improving health. I get excited about crafting, reading, running, baking, and spending time with my three crazy boys (in no particular order, and sometimes at the same time)! I love sharing what helps me get through the day, and I hope my tips help you!

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