ALS: This Disease Really Stinks

Weeks 6-7

One thing that I really love about my siblings is that we all have a sick sense of humor.  There’s not much that we can’t make a joke about, from skin ailments to digestive disorders, from anxiety problems to ALS.  My mother always told me, “Honey, whatever you do, marry a man with a sense of humor; it will get you through a lot of hard times in life.”  For those of you who know my husband, you know that I went overboard on this piece of advice!

Things heard recently in our family gatherings:

“Cut the crap, old lady.  Your limp gets a lot worse when you want something.”

To mom, who has always talked out of the side of her mouth, “Quit mumbling.  Or is that the ALS now?”

“Just wait and see what **** she tries to pull now that she has a disease to blame it on!”

And mom is laughing her fanny off through all of it.  This is the way we deal with things, in addition to serious talks and crying.  None of us kids can cry too long without cracking a joke.  I know this is a defense mechanism, but I think we’d all rather laugh than cry, and we all know how we feel about each other - especially our mom.

But, I must admit, grief is really hitting me right now.  It’s been around six weeks since we received mom’s diagnosis.  Since then I’ve been driving most of the logistics; the pace is starting to calm down now that we’ve been to Emory and closed on their new house.  The emotions are finally catching up to me and I’m at odds and ends with myself.  I vacillate between normalcy, frustration, anxiety, and sorrow.  I know this is completely normal, but it is NO FUN!  I doubt it’s any fun for my husband, either.  I’m pretty sure I keep my nine-year-old son shielded from most of it, but we all know that kids are more perceptive than we give them credit for.  That sweet angel is giving me an awful lot of hugs and kisses for a boy his age.  I don’t believe in keeping him shielded from her disease – just from my current up and down emotions.  Kevin was deployed to Afghanistan for much of the first eight years of his life and it was important to me then not to cry in front of him, because I wanted him to feel secure.  Now that Kevin is home for good I feel freer to express sorrow in front of him, but not a roller coaster ride of ups and downs. 

If you’re going through similar experiences with your own loved ones, I’m sure that you can identify.  I get a lot of inspiration from the online ALS support groups that I’ve joined.  However, when I’m sitting at my desk on a Monday morning and an employee has just unloaded on me, and a client is disappointed about something her caregiver didn’t do correctly, and my dad is upset about something, and my mom sounds depressed, it is overwhelming to me at this time.  My equilibrium is off.  I’m not giving enough attention to my husband or son.  I’m overwhelmed.  To how many of you does this sound familiar?

I have a fantastic support system:  my husband, my family, my friends, my community, and my employees.  But if you know of anyone who is going through something like this, please check their support system.  Diseases such as ALS, Alzheimer’s/Dementia, Parkinson’s, cancer, or any terminal or life-threatening disease are very isolating for the individual and their caregiver(s).  I frequently hear stories of friends and family turning away because they are uncomfortable and don’t know what to say or do.  If you know of someone like this, please reach out.  Make a phone call.  Just show up.  Be the person that makes a difference and organizes the neighborhood visitation schedule.  Commit to doing it for the long haul – the need doesn’t go away after a week or two.  I know that it’s a commitment, but it’s devastating how lonely people can be, and how a few moments of your time once a week can mean the world to someone who is suffering.  And you’ll be surprised the return that you will receive – I promise!

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