Just so you know:  If you are a subscriber to my blog or a Facebook friend, don’t be nervous … this isn’t a passive aggressive attempt at getting back at something you might have said.  Most of these encounters spawned from conversations with strangers or loose acquaintances or from people who aren’t in a circle that would be interested in my blog.  AND … I truly believe that all were well-meaning.  Besides, I know I’ve said … and still do, I’m afraid … similar things in the wake of painful struggles in people’s lives.  Now that the shoe’s on the other foot,  I realize that there are words  that help and ones that don’t.  

If you’re reading this … you are most likely one of the “voices” in the second half of the post.  Hugs and smiles … and gratitude … are being sent your way!

There’s no sugar-coating dementia with Lewy Bodies … or any dementia.  Caring for a family member with this disease will never be a cake-walk … that’s not debatable.

However, I have had enough doom and gloom articles, websites, and “advice” to depress me for two or three life times.  I can either be crushed by watching my mom become a person that I don’t know very well, or I can embrace the wonderous soul that is yet encased in her body and offer her dignity and joy as best I can.

Obviously, I’m going for the latter choice, but it certainly feels like I’m stupidly driving the wrong way on the turnpike given many reactions that I get.

Things that I wish people wouldn’t say to me …

1. “I’m devastated to learn about your mom.”  
What am I supposed to do with that?  The questions that arise: Why are you devastated? She’s not your family member.  Am I supposed to be devastated too?  Does it make me a bad person that I’m not devastated?

2.  “I’m so, so sorry. This is the most horrible thing that could happen to someone.”
Like above, is this really the MOST HORRIBLE thing that could happen to a person?  Of course it’s not easy, but “horrible”? Mom’s life is “horrible” because her brain won’t work the way it used to?  She’s still breathing, eating … feeling emotions.  Some days she laughs and jokes.  Some days she remembers things.  Some days she’s confused. But “horrible”?  She’s not in control as she would maybe like … the hallucinations are not fun … but if her life is so horrible, is that the same as saying her life isn’t worth living any more? There are just too many wrong places to go in our thinking (and actions) when we write off people and situations that are just too “horrible” for us to embrace.

3.  “I’m just sick about this … I hope that it won’t happen to my parents.”
It’s hard not to be snarky here.  Again, I know that it was well intended … meant as empathy for how hard this must be.  But … honestly, this has been said to me the most of all the comments that bug me … said by people who barely know me or my family.  What do they mean?  “Sucks for you, lady … but I sure hope that your mess doesn’t spread to me.”  “Your life is awful … hope mine never gets that bad.”

Don’t misunderstand …  I absolutely don’t want anyone to experience watching a loved one decline this way … but the comment makes me feel like I won the “Yucky Life Lotto” and should be walking around with ashes on my head so everyone else can steer clear.

4.  “Is dementia hereditary?”
This is another extremely uncomfortable response. Is someone who asks me this even thinking about what just left their mouth?  Sorry, I don’t see any way to dress this one up.  They’re asking me, “Do you think you’ll get dementia too … or your siblings … or your kids?”  Given all the other doom and gloom questions that surround that one, they’re again voting me winner of the “Yucky and Sucky Life Lotto” … and burdening me with worry for far more than my mom. (This doesn’t even account for the gooey, pitying look that usually goes with the comment. Ick!)

Don’t do that too me, people!

First of all, the studies I’ve read say that Lewy Body Dementia is not likely hereditary.  But … even it were, don’t you think I and anyone going through this have enough to worry about?  What does it matter if dementia is hereditary? Are we willing to commit as compassionate communities to love and support people with every struggle … in every stage of their lives? What an incredible benchmark for humanity if we would stop marginalizing those who have a hard road to travel.

5.  “How can you stand it?”
How can I NOT stand … “it”?  I HAVE to stand … “it”.  This is my mom … she gave me life … sacrificed immensely for me.  Do I hurt?  Of course!  I don’t like seeing her confused or unwell.  Some days, she ‘s completely aware that something is wrong  and gets a little depressed.  But other times she laughs about it.  As I said in my last blog entry, there’s just as much dignity in allowing someone to be sad … or hurt … as there is in allowing them only a life of joy.

I can stand it because God is with us.  He gives us strength.
He is not a stranger to suffering.

I just wish that people would stop acting like suffering eradicates all worth in living … all such sentiments do is burden me even more.

Things I wish people wouldn't say to me.
There is a bridge between suffering and hope … it is called acceptance.

Things that help …

There are bright spots.  Millions of them … so many that they far outweigh the things that I wish people wouldn’t say.  Here are a few of the most golden responses to Mom’s situation:

“Your mom really made a difference in my life when she ….,”    Then, without lamenting her current state, a special memory is shared. I can’t express how much it’s meant to be approached by friends and strangers alike who just want me to know how special Mom has been to them.

“I miss the way your mom used to tease and joke with me and the conversations we had, but I’m glad that your still have time with her.”

“I’m sorry.  I know it’s not the same, but I’m glad you still have each other.”

“How are YOU? Is there anything I can do for YOU?”  I found that starting with my husband’s health crisis three years ago, that a lot of focus goes to the one with the health issue and not so much focus is on the caregiver.  Instead of telling a caregiver how hard his or her life is, let them put it in their own words.  We might be surprised that there are dark valleys AND beautiful mountain peaks.  Besides they don’t need to be told how to feel … it’s a lot more healing just to be heard.

“I know this is a lot to carry.  So I’m praying.”  This is maybe the best response of all … no elaboration needed.

Again …  these latter comments far outweigh the awkward ones, and I’ve been humbled and changed as a result.  They have lifted me … transformed this into more of a worthy adventure than a life sentence of drudgery.

Thank you …

The opening picture of Mom was taken just over a year ago.  It’s one of my all time favorites.  Isn’t she beautiful?

Life Stinks Sometimes

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