Reset Button Aug 6

 The Reset Button

 Rob is still declining cognitively.  His short term memory loss is increasing.  His awareness of what is happening around him is declining.  Dementia is increasing all the time.

Tonight, I got home from a meeting, and Rob said:

You’re home! I’m retired. But, I guess you’re home. Is it Thursday? Yeah, it’s laundry day. You’re home! I’m retired. Did you have a meeting? Did you go to work? I’m retired.  I guess God just wanted me to be retired for 4 hours or 4 years or 4 somethings. You kill skunks for fun.  Is it Thursday? I guess you can do laundry….cuz…it’s Thursday…and Thursday is laundry day….etc. 

Mind you, he is mumbling all of it, so it takes me a while to interpret what he is saying. 

It’s like he has a reset button that someone keeps pushing every 5 minutes…or 10 seconds…and he starts all over again.  Did he just notice those of us in the room with him?  Pretty much.  He was just talking to us, but now he just notices, again? Yup.  It’s all new to him…but we’ve heard it 50 million times already. 

I ask him questions, he responds with the same phrases…I’m retired, I like Meals on Wheels, I like sleep, Then it is just like someone is pushing the reset button and he starts over.  I’m retired…etc….no matter what I ask him.  I try getting him to tell stories from back in the day.  No luck.  He’s retired.  He has Huntington’s. He likes Meals on Wheels.

I get home, and he is trying to tell me everything he saved up for me all day long…so much he is tripping over his own sentences…but all he is saying is the same thing as always.  You’re home! I’m retired. But, I guess you’re home. Is it Thursday? Yeah, it’s laundry day. You’re home! I’m retired. You kill skunks for fun.  Did you have a meeting? Did you go to work? I’m retired.  I guess God just wanted me to be retired for 4 hours or 4 years or 4 somethings. Is it Thursday? I guess you can do laundry….cuz…it’s Thursday…and Thursday is laundry day….etc.

But…Tuesday, a friend came over to babysit him in the afternoon and it seemed like he was doing an okay job at having a conversation??  I guess I don’t know, because I wasn’t here.  But after I got home, he said a couple of things that were not repetitive.  I was so grateful for Chuck stopping in to talk dirt bikes or snowmobiles or whatever and try to get Rob out of the fog.  I got off work and decided to take time hike-jog on my way home.  I only went 1 mile in and 1 mile out so I could be home in time to make Rob dinner.  Then it was SO beautiful outside, that after dinner and changing socks and starting Little House on the Prairie for Rob, I went for a nice long bike ride, where I scared the living tar out of a lot of deer.   

Weds afternoon, I got off work early, hoping to go back up and pick some huckleberries I left on the bushes Sunday night.  They were too small and not ripe enough yet.  So, I left them, hoping they would ripen and I could come back and pick them before anyone else got to them first.  But, Rob didn’t want to go, and then I felt guilty taking off on him again.  So, I stayed home and pouted rather bitterly.  I just really felt like he was weighing me down.  How selfish!!  I tried to get him out of his fog, but all he cared about was LHOTP, so…I turned it on and let him watch it all night.  He really could not keep up a conversation no matter how hard. I tried. 

I feel bad….because I try so hard to get him out of the fog, and he just responds with the same phrases, so I kind of give up. 

We can only hear “I like family time. I like sleep. I like Meals on Wheels. I guess God wants me to be retired. Did you sleep okay? You can do laundry tonight I guess, if you want” or whatever it is he has to say a certain number of times before we start tuning him out. 

I am trying hard to engage his brain…but…sometimes I give up.

He won’t play cards.

He didn’t want to go for a walk.

He didn’t want to go for a scenic drive.

He just wants his chocolate milk and Little House on the Prairie.

And it makes me feel trapped….Like…I should spend time with him, taking care of him…but he just wants the tv on…and I end up sitting there, not accomplishing anything, because he has been alone all day and I feel bad if I’m not paying him attention…but…he’s just sitting there, leaned over, eyes closed, “watching” tv.  I would love to go pick my hucks...but...what do I do with Rob? Especially when I've been gone at work most of the day...

This is one of the reasons why he needs a caregiver part time while I am at work.  Maybe they can get him more active. Maybe they can get him out of the fog.  Maybe they can get him outside, or around the block, or in the back yard. Maybe they can get him to play cards or tell stories or go through photo albums.  Maybe they can get him out on a scenic drive or look at some deer.  And when I get home, I won’t hear, “change my socks, you skunk killer you.” And maybe I won't have to rush home to try to care for him.  Maybe I could stop and do something on the way home and then go home refreshed and ready to help him.

I am not equipped to take care of him with the very best memory care or medical care as this disease progresses.  There are facilities and people who specialize in elder care, memory care, home nursing, etc.  

I really want to keep him home as long as possible…but when he is really bad…I think the best thing I can do for him, is to get him in a memory care facility.  They can work with him cognitively and physically, and give him much better care than I can provide. Obviously, he is not at that point right now!  And it may be years until he is. But once his symptoms and physical and mental declines are beyond the scope of reasonable care that we can provide at home…the best thing for him would to be in a facility that will care for him 24-7.  But…we’ll cross that bridge when we get there…for now…I just need to get everything arranged to get him started with in home care.  He needs someone to try getting him out of his fog.