Socializing, respite, and Nights Of Hope And Joy

Journal entry, July 12, 2016

Thanks to the folks from the Purple City Alliance — here it’s Riverside CA, a bunch of caregivers & care recipients got together for food, music, & fun at a local senior center a few days ago. It’s a monthly get-together called Nights Of Hope And Joy, with a live band and all. Dad had a good time, and he did some socializing, which is always good for him.

See, socializing is good. Gets Dad out among them. This sounds terrible, but this means other people are watching him for a couple of hours and I get a little respite. I’ll take it.

Unabashed pitch here: This one’s at the Janet Goeske Senior Center at Sierra Ave (at Streeter), Riverside CA. Second Tuesday of the month, at 6 pm. Rich Gardner is the front man here. We’ve been doing this about six months, and it’s growing.

Not just fun, but it’s a resource. One of many, and it’s really fun.

Does your town have something like this?

Trying to figure something out …

Journal entry: July 25, 2016

Not a good day for Ole Dad. Cognition: Poor. Had trouble locating all of the components for making breakfast (hint: Milk is in the fridge). Mobility: Poor (where’s a wall when you need one?). All the elements of a lousy day, and that is the new normal around here.

But wait. There’s more, and I’ve never seen it before.

He’s agitated. Like can’t-sit-still agitated. Fidgeting. Either he has to go to the head real bad, or something else.

Now, I’ve heard agitation comes with the dementia package, but so far I haven’t seen it like that. Sure, the wandering-around-the-house part, but never this. So yeah, it’s cause for concern.

This is really not good.

Lady Vols’ coach Pat Summitt fought the good fight

  • Eight national championships.
  • More than 1,000 wins.
  • 39-0 record in 1997-98, won (another) national title.
  • 100% graduation rate.
  • Fought early-onset dementia since 2011; diagnosed at 59.

The first four on this list were easy compared to the last one.

Pat Summitt ended the fight June 28, 2016 at age 64.

Pat Summitt, winningest coach in Division I history, dies at 64 – ESPN

The Pat Summitt Foundation

All the news that fits, we engage

Engaging over the news is better than just reading it.
Engaging over the news is better than just reading it.
Dad’s always been a news buff. He always liked knowing what’s going on in the world, and that hasn’t changed much. The only change is in how he gets the news.

That’s become a favorite way for us to engage. Might even be the high point of his day.

Guaranteed, when I’m at the big screen computer Dad will come in and park himself in the chair behind me. I know what that means. Take a break from whatever I’m doing. Pull up Yahoo News and start sorting through stuff. Or go to my Twitter feeds and look for the hot news.

He especially likes the videos. Crank up the volume, go full screen, and he’s happy. If a story doesn’t have a video I’ll read it to him and interject my own commentary. Just like in the old days he gets into the political scene; the Trump/Clinton campaign is always good for a few laughs anyway.

Some of this gets pretty funny because we’re on different ends of the political spectrum. Admittedly, I’m just to the right of Genghis Khan. Dad isn’t. He’s already decided who he wants to vote for, while I favor lining them both against the wall and starting the whole mess over. Sometimes this sparks some pretty lively conversation.

It’s that engagement thing. I guess dementia is a pretty lonely disease; you’re just a prisoner of your own head. Anything to engage, to start conversation, to actually do things, is a big part of coping.

Watching the news on TV or reading it online is fine; it keeps the care recipient somewhat informed of what’s going on. But that doesn’t keep him engaged unless he cusses out the TV.

The new normal, and preparing for some time off

I don’t like this. Not one bit.

We went to see a play the other night, something Dad always likes to do. This isn’t exactly a time-in-the-barrel assignment for me ’cause I enjoy it, but there are a couple of alarming things. From the journal:

He wasn’t as social as before, and he looked lost. Almost getting to where he really has no business going out, but what am I supposed to do? Hide him? Lock him in the bedroom and shove bread and water under the door? Stick him in The Home? Over my dead body on all three.

I’ll unpack this one another time. Too depressing to think about now.

This also complicates things when I want to take off for an evening. Like I have a one-night gig in another town (I’m a working musician), and my original plan was to bring him. Not so:

Now I’m beginning to wonder if I can actually make it out to Bellflower without incident & leave him home. No way can I bring him; the travel will be too much for him. By the time we get there he’ll be for crap.

About the only thing I can think of is prepare in advance. This means:

  • His phone charged up.
  • I’m on speed dial.
  • Dinner in the freezer. It’s one of those microwavable meals he likes, and it’ll be right there in front where he can see it.
  • I should clue in the neighbors so they can stop by and say hello, or let me know if anything really weird happens.
  • His stereo’s on and cranked up the way he likes it.
  • Thank God he’s not prone to wandering off the property.

Do I feel bad about leaving him like this? Uhh, yeah. But he’ll be okay.