The last two days have been filled with exhaustion and tears… so I write about the times that we laugh to remind myself that such days do exist.

Last week I opened up about the road my family is on regarding my mom’s battle with Lewy Body Dementia.  It’s not really a battle … it’s a more of a full on assault by a disease that does not play nice and doesn’t leave Mom with much to fight back.

It didn’t take much writing to hit some of the anger that bubbles around the edges of this experience.  It is anger grown from the soils of guilt, sadness, helplessness, weariness … and helplessness. (I said that, didn’t I?)

It took a “stupid woman” (two of them actually … you’d have to read that post to understand) to awaken the anger.  To be fair … the stranger who scolded me likely thought she was helping our family friend whom I was escorting in Walmart. I had missed that the friend had a severe case of bedhead until it was too late.

I have imagined the irony that this woman may have written a blog of her own exhorting that people show a little dignity towards the elderly. Why couldn’t those people have made sure that the poor woman was well groomed before taking taking her out in public, she might have bemoaned.  I would deserve that.

I’ve also realized that I’m not much different than “Mrs. Sorority” and how quick I am to make judgments about people based on appearance only.  It makes me more sensitive to the story behind the scenes.

In Mom’s case there is so much more behind the scenes.

Just how real do I get?

Should I be real enough to tell you that we laugh sometimes?

What might shock some is not how devastating Lewy Body can be – because it is wholly destructive, and its outcomes are gut wrenching – but the fact is, that our family laughs about it.

We have to.

Unprocessed anger only hurts others, and I refuse to finish my journey on this earth roiling in bitterness at others.  Besides, I’m not really mad at other people … I fight the anger (and fear) of not being able to control the situation.

As a note: I sure have appreciated the wide support from friends who aren’t taken aback when I — a teacher and former associate pastor along side my husband — reveal my unpolished emotions. AND I’m equally appreciative of those who won’t let me get locked into anger or self pity as solutions … because they ARE NOT.

Ignorance … guilt … inconsolable grief …. none of these things help Mom either … or me.

So we laugh.

Not always, of course, but as a family with a twisted sense of humor that’s how we often cope.

How Real Do I Get About Dementia
Mom is still just as adorable … and just as stubborn, I fear.

Mom laughs too … I think that’s why we can laugh at times.

A few months ago, Mom had a very clear day and asked me about Lewy Body.  “I feel like I have been asleep for a long time.  Where have I been? Am I myself? Do I say strange things?”

I told her that she’s usually very quiet and that even though she doesn’t say much, she is taking in everything around her.  For example, when a mild heart attack in February set off the season we are in, she rapidly declined and out of the blue, the doctors called us in and brought up hospice.

We were stunned.  Was Mom failing that fast?

She had stopped eating and responding to us.  “She’s giving up,” a doctor said. And truly, it did not look good for two or three days.

Then suddenly …

It was the middle of the night …  Mom simply sat up in her bed … saw me resting in the cot across the room … waved at me and asked, as if we were in an ongoing conversation,”How long have you been here?”

She talked to me for two hours that night.  “She was just taking a break,” one nurse suggested.

As another nurse came in to dispense meds, Mom looked at her quizzically.  When the nurse left, Mom asked, “Is she the one who talked about hospice?”

I was stunned … that had been six hours earlier when Mom’s vitals were barely registering, and we were certain that the next day’s discussions were going to focus on how best to get hospice started. She had heard that?!

“Yes,” I answered … always honest with Mom.

“Well … that’s bull****!”

Uhm … wow … Mom.

As I told her that story on that recent clear day, she threw her hand to her mouth and giggled.  “I said that?!”

She giggled more.

This coming from the woman who exhorted her four children to watch our mouths and who did not shy away from emphasizing her command with a bar of soap.

There are other moments that have tickled us, although not all readers may agree. If you struggle with the humor in times of suffering or at the expense of dementia, you might not want to keep reading.

More Funny Stuff

Many people were touched at the pictures of Mom and her Dear Friend that I included in my last blog.  What readers don’t know is that in the first picture, Mom is wearing a top that one of the nurses scrounged up for her because she refused to wear any of the clothes that I bought her.  None of her old clothes fit her any more … at all … so I bought new ones … but she will not be convinced that they belong to her.  So … she was dressed like a CNA in that picture.  I look at the purple shirt with its happy, little koalas and laugh at her stubbornness in believing that she has no clothes that are her own … at the kindness of the nurse to go along with Mom … and at how stinking cute she looked.

Mom and Barb 2018

I also think that this is her payback for what a snot I was during the terrible two’s and again as an obstinate teen.  Well played, Mom.

Lewy Body scares a lot of people because patients can hallucinate.  (I have a theory that the hallucinations come in part from a serious interruption to REM sleep over long periods of time … but I guess that is for the researchers to dig into more.) It’s scary when loved ones start talking out to someone who isn’t there.

One family member is especially adept at playing along when Mom hallucinates (which thankfully isn’t very often).  He answers as if she’s talking to him.  After several minutes of this kind of interaction, Mom turned to the relative and firmly reprimanded, “Would you be quiet.  I am not talking to YOU!”

HaHa!

That’s fair! She wasn’t talking to him.

IMG_6714
We still get the “look” … you know … the MOM LOOK … when we’re not minding our p’s and q’s.

The other day, Mom’s roommate … whom I always thought was hard of hearing, answered Mom (who was talking to invisible people) from far across the room … but Mom, who is a bit deaf herself, didn’t hear the answer.  So … round and round went the conversations.

Good thing mom couldn’t hear the roommate answering her, or the sweet woman (whom Mom adores) might have been reprimanded, “Be quiet … I’m not talking to you!” as well.

Gotta laugh.

But I have to ask … 

Is God laughing at this situation?  Is He humored at the confusion, the decline, the suffering? Is this for His entertainment?

Not the merciful God and Savior that I have come to understand.

I truly believe that He laughs with (not at) us. That He knows our tears and holds our hearts.  That He is not foreign to suffering.

The Cross reminds me of that every time I need a reminder.

He knows that there is humor and hope when we hold loosely to life on this side of Heaven knowing that it is all temporary and that a beautiful life yet exists where disease, brokenness, and sin will no longer have their daggers in us. And don’t forget … laughter is good medicine.

That’s how I see it … and that’s why I will try to keep laughing … will not shy away from wrestling through the anger … will look for the mercy and kindness … will give myself permission to be human.

I’ve loved the stories that others have shared and welcome you to continue sharing.  You pray for me and I’ll pray for you.  As I said last time, prayer carries a burden like nothing else can.

Thank you for all of the kind support.

Finally … a few pictures that remind me that Mom is the one who taught us to laugh to begin with.

momjokingfbmombirthdayfbmom&joshfbmom&girlsfb

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