A few weeks ago, I went to hear The Minimalists, Joshua Fields Millburn and Ryan Nicodemus, talk about their new book,  Everything That Remains. I listened as Joshua read an emotional chapter dealing with boxing up his mom’s apartment after her death.

Earlier that day, I’d been helping clean out a friend’s condo, going through 1000s of pieces of paper and pictures, getting it ready for closing. I’d spent almost a week doing that, and would spend another two weeks sifting and sorting before it was all done.

She suffers from early onset dementia, and recently had to move to a memory care facility. (Consider this a cautionary tale. Imagine your family or friends going through all your things, what will they find? If that isn’t enough to scare you into cleaning out your closets, nothing is.)

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This picture of the old switchboard room looks like utter chaos:  lines crisscrossing everywhere, 1000s of possible connections, people frozen in time.  If we could listen in, we’d hear a jumble of voices, but it’d be hard to decipher much.  It’s the perfect symbol for a dementia brain, don’t you think?

Trying to talk to someone with dementia can be beyond challenging.  Sometimes words are lost all together; other times, they are mixed up in fantastic ways.

But if you listen hard, and consider the context, you can become quite adept at speaking dementia.

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I’ve had an old Hank Williams’ song running through my head for days: “Well, why don’t you love me like you used to do?  How come you treat me like a worn out shoe?”

I figured it was because I spent the weekend visiting Mom in Texas, and that CD (one of dad’s favorites) played in the memory care activities room a great deal. Then I realized it was because I’d been thinking about this story, and that tune is a perfect theme song.

If I’ve learned anything from my years of caregiving experience, it’s that I’d better have thick skin.  There are no filters or social graces much in the dementia world. If you take things personally, you’re in for constant trouble.  You might as well keep your therapist on retainer.   [Read more…]

I saw my doctor last week for a physical, and had to get a shot.  I haven’t had a shot since I was, I don’t know, 12. When the nurse came in with the needle, I said “Guess I’d better put on my big girl panties.”  That made me think of my nephew’s wedding. Wait, what?

Let me back up. See there was this historic Five and Dime store in the town where they got married, and it had all this crazy old stuff, including some remarkably ancient granny panties. They were big. Get it?

Stick with me here. [Read more…]

I recently watched a Teepa Snow video in which she discussed the first symptoms of dementia.  The comment she made that struck me was that you didn’t recognize it as dementia then, but looking back, you sure recognize it as dementia now.  The old “hindsight’s 20/20” rule.

Mom exhibited all 10 early warning signs of dementia years before her official diagnosis. When my family discusses these behaviors now, we have an oh! that’s what that was all about moment.  But when they were happening, we were really confused. [Read more…]

I so wanted to write one of those “shiny happy people holding hands” New Year’s messages.  One of those posts you’d save for the rest of your life, pull out even on Columbus Day, because it was just that good, that positive.  You’d share it with thousands.  The Dalai Lama would tweet about it, it was so profound.

I sat in my chair and tried.  I squeezed my eyes shut and concentrated.  I started about 10 posts.  After every one, I yelled BS and turned off the computer. [Read more…]

I was talking to a friend yesterday when we both went into one of those “I can’t remember” moments.  Sadly, I don’t even remember what we didn’t remember.  But she laughed and said she felt like “Aunt Clara.”

AUNT CLARA!!  You know…that adorable, forgetful, bumbling aunt of Samantha’s on Bewitched.  I laughed about that all day, then it hit me:  Aunt Clara had dementia.

Think about it: she forgot her spells or used the wrong ones; she had trouble finding words; she lacked good social judgement; and she wasn’t always dressed appropriately.  Oh, and sometimes pink elephants materialized. [Read more…]

Listen up, people.  I have some things I need to say now, in case I get dementia later.  I won’t be able to tell you these things then, so let’s get this over with.  I have some rules you need to promise me you’ll abide by.

Promise as in pinky swear, as in blood sister/brother swear, as in cross your heart and hope to die swear. Wait, that last one is awful. Who came up with that? Way too medieval. Don’t do that, but take some sort of oath, will ya? [Read more…]

I can just look at this picture of the Cowardly Lion and chuckle.  And if I listen to his courage speech or his King of the Forest song, then I’m pretty much guaranteed to laugh out loud.

I certainly identify with him lately.  I’ve been walking around with my paws up, saying to dementia put ’em up, put ’em up while I growl and prance.  Well, ok, I haven’t growled or pranced…not much anyway.

Yeah, that’s me:  not afraid of nobody, no how.  Until dementia punches me in the nose and I burst into tears, crying Whadya do that for?! [Read more…]

I love a good carnival.  Roller coasters, crystal ball seers, that creepy guy running The Himalayan ride who won’t let you off the damn thing even though you beg for mercy as you fly by (OK, not him).

Just the word carnival invokes that kid feeling of running away from it all.  Running away to join the circus?  Never thought of it before, but I saw a quote this week on Facebook (that bastion of culture) that said something like I’ve thought more about running away as an adult than I ever did as a kid.  Right?? [Read more…]