More of July 2020

Wow...Rob's dementia...
sigh. 

A friend told me about someone they know with Alzheimer's.  He had one of those rare moments of clarity we see with dementia patients.  He told his son that dementia is like being in a fog.  You know you are in a fog, and you are trying to get out, but you can't find your way and the fog is so thick and confusing you get turned around and lost. 

I so appreciate hearing that. 
It helps me understand Rob more.
Only, he is pretty much in the fog all the time now.

His repetitious phrases are about all we hear from him now.  The same things, all day.
He starts over again after 5 minutes or less. 
He is constantly saying Hi to the kids.  They are like - we've been sitting here the whole time.
But for him, between the fog and the short term memory loss, he is starting over.
He has a reset button being pushed every few minutes.

When he isn't telling us the same phrases over and over, he is now whispering facts to himself.
I am 49. I have Huntington's. Today is Wednesday.  I have Meals on Wheels. 

OR, because he is trying to keep track, he asks us the same questions over and over and over.
"are you going to work today?" yes, it's Wednesday, I have to work on weekdays.
"are you going to work today?" yes, it's Wednesday, I have to work on weekdays.
"are you going to work today?" yes, it's Wednesday, I have to work on weekdays.
"are you going to work today?" yes, it's Wednesday, I have to work on weekdays.
"are you going to work today?" yes, it's Wednesday, I have to work on weekdays.
"are you going to work today?" yes, it's Wednesday, I have to work on weekdays.
"are you going to work today?" yes, it's Wednesday, I have to work on weekdays.
"are you going to work today?" yes, it's Wednesday, I have to work on weekdays.
"are you going to work today?" yes, it's Wednesday, I have to work on weekdays.

"Did you sleep okay?" (at least he is asking) No, I can't sleep in the bed with you.
"I like your body heat." or "I have Huntington's." or "I like sleep"
"Did you sleep okay?" (at least he is asking) No, I can't sleep in the bed with you.
"I like your body heat." or "I have Huntington's." or "I like sleep"
"Did you sleep okay?" (at least he is asking) No, I can't sleep in the bed with you.
"I like your body heat." or "I have Huntington's." or "I like sleep"
"Did you sleep okay?" (at least he is asking) No, I can't sleep in the bed with you.
"I like your body heat." or "I have Huntington's." or "I like sleep"
(at least I get a little variety with this one...ha ha)

Whenever someone leaves the house, "where are they going?"
then repeatedly, "So....whoever had to go to wherever?"

Paperwork for my long term care insurance is sitting on the dr's desk...waiting for some forms to be filled out and signed.

I had a cabin reserved earlier in the month and I just couldn't figure out how to bring Rob and make it work.  I sold the reservation to a friend.

Rob's IBS is becoming worse and now incontinence (especially digestive emergencies) is getting more frequent.  He attempts to clean up behind himself as he changes clothing, but he isnt' physically or mentally capable of either.  I always have a mess waiting for me on the days he has issues.  I am tempted to put him in a diaper or depends, but...I'm not sure he could clean that up by himself either.  I'll give him a couple more weeks before I make a final decision on that.

I had another cabin reservation coming up, and we decided to give it a whirl to see if we could take Rob camping.

He did it...but...it did not go great...so...I'm pretty sure that was our last camping trip as a family.
It was lovely to go.  I did enjoy parts of it.  But Rob is so high maintenance that it is just too hard to do.  He needed his nap, so we went outside in the heat and got ate by bugs for 2 hours, but when we went in the cabin, he said he didn't get any nap (oh we heard him snoring for 2 hours).  He didn't sleep well, and his flopping and twisting and turning with the slickery sleeping bag was just too noisy.  He fell out of bed once.  At 1:30 he made me walk him outside to pee.  We all had to help him with all of his food, hygiene, teeth brushing, pill taking, clothes changing, etc.  I was so happy to get him out in the woods and proud of him for doing so well.  We get out in those situations and his phrases change.  We get to hear new things.  We stimulate his story telling and conversations.  He comes out of the fog - briefly - momentarily - then he sinks right back in.  So, for his sake, I'm glad we took him.  But...I just don't think we can do it again.  It's too much work, and no one sleeps except Rob. 

Once we get home, he seems to sink further into the fog.
This is where we are...

Whelp...we are at this point. I am prepping Rob for tomorrow.

Rob is having a hard time keeping track of his days. He repeats the same phrases over and over all day long. He does not know how long (or if) he takes a nap, even if he sleeps for 2 hours. Tomorrow he does not have Meals on Wheels for lunch, which has not been a problem. Everything in the fridge is labeled IF he looks through it.

I've spent the last 2 weeks working on getting my long term care insurance fired up so I can hire a part time caregiver while I am at work. I'm just waiting approval now. Not sure how long that will take...

In the meantime, if anyone would like to stop in for an hour or two in the afternoon and take him for a drive or a walk around the block, play a card game (he can remember how to play 31) or sit in the backyard or livingroom and try to get him telling stories (don't worry if you don't understand what he is saying), I created a sign up to help me keep track. We have been blessed with an abundance of friends and family who all want to help...so many, I don't know where to start. (Thank you all so much! Your love and compassion are overwhelming!)

You never know, he might perk up and get you laughing. Around new people (not us) in new places (not the livingroom) he sometimes comes out of the fog and can try to tell a story or memory.

Having someone every day will overwhelm him at first...and he has a very rigid (but empty) schedule. But...we'll try it...cuz why not🤷‍♀️

I'm only starting with a couple days these next 2 weeks and we'll see how it goes.

I picked up the insurance paperwork.  I am sending it in tomorrow. We need someone watching him while I am at work.
I woke up having a panic attack.  Panic attacks make my chest feel tight.  Immediately, I think, "Oh now, what if I have Covid?"  and my concern is not for myself, even though I have some lung issues - but my concern is - my daughter's job, my son's basketball, my son's summer vacation plans, my co-workers and my job, and all of these things - which only increase the anxiety.  Then I get depressed.  I decide to work from home.  I crawl in bed and sleep another couple of hours, but can't really get good rest, because of the anxiety.  Then I feel guilty, because I trust God with our story.  But I don't feel like I am glorifying Him or trusting Him if i am stressed, depressed and anxious.  

Meanwhile, Rob is rocking back and forth on the couch asking me about meals on wheels for the 87th time.  

It will get better.  I know it will.  I am also trying to remain positive and focused on the known future in Christ.  The unknown, ever changing, scary world around me, as I watch our country fall apart, and so much hatred and violence is not MY ultimate future.  I need to keep my eyes on Jesus.  He is coming back to set up His Kingdom...and what a glorious Kingdom that will be.  Praise God!  That's the goal.  I might be sloggin through the mud and muck and mire of life right now...but Jesus is standing in front of me, leading the way, calling us home.  

July 4 Family Week

Since Rob's little siblings have grown up and moved away, it has become a tradition for them to come visit on Independence Day Week for a family camping trip/wheeler ride/reunion.

I wasn't sure how Rob would do this year.
Thankfully, we have the booster seat for him to ride double.  
We've been on a couple of rides earlier this summer.
But, he tires out easily and with all of his digestive issues and rigid potty schedule (every time his watch beeps, he has to pee), so...I wasn't sure about an all day ride with the troops.
One thing I have to constantly tell him, is to take his arms off the hard plastic rests...between leaning on them and his involuntary movements, he wears holes in his elbows.  His clothes are fine, but his elbows are worn down almost to the bone.  He doesn't even notice.  I ordered him some elbow pads to put on him, but they were not here for the 4th. 

He did good!  He did much better than I expected, and it was SO good to see everyone out and about.


July 6 - The AC guys are here!  They are so nice and awesome!  I didn't worry one bit about heading to work and leaving Rob there.  

July 7 - they are back!  I decided to give the AC guys a break from Rob, so we headed to his dad's house to shoot bows with his sister and have lunch up there with them.  It worked perfect.  They had the run of the house, and we were out of their hair.  Plus, we got to see TJ and Texas and shoot bows with them.  We got home right as they were finishing up.  I was out chatting with them and they were getting ready to leave and HS came out of the house and said, "You aren't going to like what dad just did..." "what?" "he flooded the toilet"
sigh.
really?!
And not only that, but he used the kids bathroom instead of ours.  again.
The kids were so disgusted by the whole thing.  C brushed right past me and said "I'm outta here" and took his truck to go fill gas cans for our ride the next day. He was supposed to be getting ready to go to basketball camp...but obviously couldn't. I had Heidi grab me a bunch of towels and spent the next hour thoroughly cleaning the bathroom.  We left grandpa's house and came home just so C could go to basketball camp...and that wasn't going to happen.  He probably could have shown up late...but then what would he tell them when he gets there late..."Why are you late?" "My dad destroyed the bathroom" um...no.  
Actually, he handled it fine...I, on the other hand, had major guilt and sorrow over the deal.  I want to give them a normal life growing up, but that is not happening and won't happen any time soon...then they'll be gone.  

Later, I asked Rob what happened in the bathroom and he just kept giggling and saying "I used the wrong tool" Whatever that means.  I think he used the brush instead of the plunger, but the kids said he flushed at least 6 times in a row.  

I am getting tired of cleaning up toilet messes.  At least I didn't gag my way through this one...

Rob decided to stay home from his birthday ride.  Good thing, too, as he never could have survived that trail that day.  It wasn't the worst trail I've been on with a wheeler, but it was just very long.  And it was definitely a challenge for the dirt bikers. It was GORGEOUS!  I'd like to do it again when I'm not in a time crunch.  We were trying to do it faster, so we could get HS back in time for a church commitment.  (that didn't happen) 
I felt bad for leaving Rob home, but he couldn't have done it...and we asked him multiple times to come but he didn't want to.  When we got home, I walked in the door and he was talking so fast I couldn't understand him.  I wasn't even in the door and he was saying "it's my birthday, I'm 49, my dad called me, I'm constipated, I had meals on wheels, It's my birthday, I'm 49, my dad called me, I had meals on wheels, I'm constipated" But he came right out to "help" us unload (he usually just watches).  While we are unloading, he mentions that he did not eat dinner yet.  He is 2 1/2 hours late for dinner.  We are all in shock - he always eats, right on time.  Finally he said, "I didn't know what to eat."  WHAT?!  RED FLAG WARNING!  All of the food is labeled in the fridge, and he makes himself tv dinners for lunch when he doesn't have meals on wheels...so he should have been able to fix himself some dinner.  Nope.  Okay...we are at this stage now....

The next day I frantically finish up my insurance paperwork for long term care insurance so I can get a part time caregiver.  No more time to make a decision and figure out what I am going to do and how.  We need someone here.  The sooner the better.

The next day we invited ourselves up for a campfire/birthday party and to say goodbye to TJ and Texas.  He did good that night.  He talked to his dad and got up and talked to Texas.  
And Family week was done and gone.

Respite

Respite

res·pite /ˈrespət,rēˈspīt/
noun
a short period of rest or relief from something difficult or unpleasant.

Similar: 
rest 
break 
breathing space
interval 
intermission 
interlude 
recess
lull 
pause 
hiatus 
standstill 
relief
relaxation 
repose 
breather 
letup

See also: Montana

June 2020

It's so confusing.
his mind is gone...but he still has a rigid schedule.
He is determined...the more he walks, the longer he can walk.
He might be toddling and swaying down the sidewalk...but he is doing it.


Determination.
Grit.Live your best life.
Never mind the 4 layers of clothes in the hot sun!! 😳🥵 He is always cold.

Rob's dementia is getting much worse.

He is now, also on a new medication to slow his involuntary movements.  After the last time we tried some was such a disaster, he is on a very very low dose.  I think it is helping.  He still has TONS of involuntary movements, but nothing like it was.  It is still very difficult to sleep with him, as he wakes up in the middle of the night and the whole bed is shaking violently as he twitches and jerks around.  But...his movements are less than they were. 

His balance is getting worse.  He gets back on his heels and tips over...but he is a weeble wobble or the Matrix - he usually manages to stay on his feet and not fall down.  He has fallen down in the shower 2 times now - after his shower is done, standing in the bathroom, and blowing his nose.  Now...if you ever saw him blow his nose, this would not surprise you.  He uses his entire body, violently.  He hols the kleenex or tp up by his forehead, leans his whole body WAAAY back, then violently jerks himself forward while blowing.  It's really how a mime or silent movie actor would blow a nose.  BUT...he tips himself over and lands in the shower.  Poor guy.  I keep telling him not to blow his nose unless he is hanging onto one of the handles or leaning against the wall or toilet.  

The more he falls, the more he decides to "work out" and do "box squats (you've seen the video) and go for walks.  He has started wanting to walk before I get home from work.  If the kids are not home or busy, he will sometimes take off around the block by himself!  This makes me nervous - what if he gets lost?  But how could he?  We walk the exact same route every day and have the same exact conversations at the same spots every day.  "I like this red truck" "I like that Chevy" " I like that Dodge"  that's about it.  Again, I need to get a caregiver who can take him on his walks when I am not home.  It takes 40 minutes to get around the block, but he does it. All the neighbors look out for him. I finally convinced him to stop walking alone because something could happen to him.

In the meantime, it is unbearably hot in our house as usual.  I don't want to get out the AWESOME giant window mount ac unit that was given to us and get it in the window.  We had a good tax return.  I got an estimate for central air.  I also need a new furnace and duct work, so woohoo! They will be coming in early July to install it.  It can be 78 in the living room and 87 in C's room, and Rob is wearing 3 layers and says "I'm about right.  I'm comfortable." - fun Huntington's fact - it screws up your metabolism and you get metabolic diseases - so they are almost always cold.  In fact, the last 2 times we had to get our temperatures checked to enter a building (stupid covid), his temperature is low.  He sits around 96 or 97 degrees instead of 98.  

Last summer, we were not able to do much.  Either Rob couldn't do it, or wouldn't do it, and we felt bad leaving him home alone when he's home alone all day.  At the end of the summer and start of the school year, it was almost a relief to get out of the house and have an excuse to escape...but we were all so sad and depressed because we had not had a chance to do anything all summer.  I decided this summer would be different. We can't stop living.  And we can't take care of Rob if we feel like we are being held hostage in our own home.  So, besides my hiking escapes, the kids and I have made it a real point to get out together...we hiked a couple times, we have been fishing...so, we hiked into Lava Lake.  Of course, it started raining when we got there, but C caught a nice big fish on his 3rd cast.  So we turned around and hiked back out. :)  ha ha.  

Rob has been much more accepting of this.  He knows we can't stay home all the time.  he knows he can't go with us.  He's pretty good staying home alone - it's no different than a weekday.  He can do his morning routine, make his lunch, take his long nap, and then we are usually home to get him dinner and spend the evening with him.  It has been very beneficial for us to get out.  Even if it is just taking a car ride to a ghost town with my mom, or whatever.

I have also been making it a point to get Rob out of the house on a scenic drive in the evenings.  We don't go as often as I would like, but otherwise, a typical evening is just to get home and turn on Little House on the Prairie for Rob, feel like i have to sit there and watch it with him, and then be lethargic and depressed and annoyed with him repeating the same phrases over and over.  So, I try to give the kids a break and allow myself a chance to get out of the house, and off we go.  I know I need to do this more often.  Hopefully the caregivers can do that.  

So...to get him out of the fog one night, I thought we should play cards.  It would be good cognitive and occupational therapy.  I wasn't sure how it would go.

As his dementia worsens, he has several phrases he repeats over and over. It is rare to hear a conversation or a thought process. Just the same phrases over and over.

I’m often surprised when he can have a conversation (thanks for listening to him, Michelle) or tell a story, because we are all so used to hearing the same phrases 50 times a day.

Last night was very interesting to watch him.

He kept repeating the same phrases:

“It’s still raining outside” (about every 5 minutes),

"I guess it’s raining outside” (a little variety),

“I like Meals on Wheels” (today is a MoW day – he’s excited),

“I think I ride like a girl” (started this a week or so ago – usually paired with “I wouldn’t mind getting a 3 inch track”- sure, for the 2 short rides up Olson, very slow, on the trail?),

“I like playing 31”,

“you ol’ skunk killer you”
or, “you can have that, you ol’ skunk killer” (EVERY time he laid a card in the discard pile),
or “you kill skunks for fun” (at least there’s a little variety, I suppose),

“I think my taste buds are getting better” (we have no idea, but hear this at least 10 times a day),

"I like family time",

and, since his back was sore from standing on the garage floor in his slippers watching me work, he started saying, “my back hurts from God’s Garden, cuz I sat on a bucket all day” (this was 10 years ago, so??)

"There's a cold breeze" (it can be 90 and he's in 3 or 4 layers of clothing, but he still says there's a cold breeze),

So this is the “conversation” we had the entire time we played cards…

which leads us to believe his dementia is really bad and his brain doesn’t work at all...BUT, surprisingly, he was aware enough to play cards! So…half his brain was working right…

He was slow, but he could play...but all he could say was the same phrases over and over.🤷‍♀️

Dementia is weird.

Huntington’s is dumb.

God is good all the time.

All the time, God is good.

Memorial Day 2020

We used to ALWAYS go camping, rain, sleet, hail or SNOW on Memorial Day weekend.  We called it memory-able weekend - always trying to build those family memories with the kiddos.

C-man bought himself a dirt bike earlier, and his friend bought one too.  They invited him camping and riding memorial day weekend. I was so incredibly grateful.  He had just finished his distance learning with school being closed for Covid and I was so happy he could go and cut loose with his friends and dirt bike. They would be sleeping in tents, but there was a wall tent and a camper along.  It was supposed to rain and snow most of the weekend.  But he could go...and be with good, manly, Christian men...who could be a good example to him...real dads...real men...instead of...the no-man, no example we have at home. I hope that does not sound like I am belittling Rob...I'm don't mean to...but Rob is gone...he's lost somewhere in the fog of his brain...and the shell of the person left behind is not him, and not a dad, and not an example.  So the bike got loaded and they asked C to go early and help set things up.  He came in the house, threw his camping stuff in his truck and left.  I was SO grateful and excited he could go. And I was SO VERY sad that it wasn't us going as a family. I'm so glad he can go be normal.  But we don't get normal anymore.  It should be us going as a normal family, with his dad and him bombing around on dirt bikes.  He drove away and I was so overwhelmed with mixed emotions I just sat in the kitchen and cried.  Ugly cried.  I'm so proud of him and the man he has become...so independent and on his own...but mourning for him and us...that he has to go do this with other families and not our own...and then so grateful and full of love for these families who welcome him as one of their own.  God bless them!  So off he went.  And had a (cold) Memorial Day camping and dirt biking trip.

And we were home.
And even though I should be getting used to that....it was still weird and sad and lonely and depressing. 
So...I HAD to get to the mountains.
And I loaded Rob in the car and off we went, up the mountain!

Here is my Facebook Post from that day.

We used to always go camping memorial day weekend, rain, snow, or (occasionally) sun. Took Rob on a scenic drive after dinner tonight it's another beautiful Mayvember day here in Montana.

Lots of deer, a coyote in bow range and some elk far away and some elk we could just about spit on.
I must still have a farmer gene, cuz I said, "it's alright mama cow, you're okay"

Rob was telling hunting and snowmobiling stories...we know just about every inch of this place. I'd have liked to have my sled.
I can't help but wonder how Cody is faring in a tent on a mountain right now...



We saw a LOT of elk and several cows up close.  They were singles, dropping and hiding their calves.  I felt a lot better...and I LOVE snow...but it made me want to go "REAL" snowmobiling for once again...and felt like that will never happen. But, Rob perked up and had a good time and became a chatty Kathy until we got back down to the highway.  Then he was slumped back over with his eyes closed again.  I still want to cry with both gratitude and sadness that we will never be able to be on a family dirt bike/atv camping trip again. 

May 21 Taking away his man card

Took Rob's man card away today...but at least he was willing and accepting of the situation.  Maybe he didn't fully understand what was happening.

Another step of our journey today.

I don't really want to call it a milestone, but I suppose it is marking another mile in our journey.

Rob's driver's license was expiring soon, so we needed to renew it. He has been driving since LONG before he had a license. When he was in 5th grade, his teacher called his dad and said, "do you know he's driving to school?!?!" and Rob Sr says, "well, yeah, how else is he supposed to get there?!"
🤣

On the first day of Driver's Ed, his driving partner wrecked the car coming out of the school parking lot! 🤔 When it was Rob's turn to drive, after a couple of minutes, the teacher said, "umm...you've driven a lot before, haven't you" After that, Rob never drove during driver's ed. He sat in the back while his driving partner got double time.

As a diesel mechanic for a trucking company, he often took trucks for drives up and down the road to help diagnose problems and see if they were repaired. He went ahead and got his CDL. For 27 years he drove big rigs, dump trucks, transfer trucks, side dumpers, tankers, septic pumpers, you name it. He had several endorsements.

But...4 years ago, the neurologist told him "no more driving."

Today we went in and downgraded his CDL all the way down to an ID card. He no longer has a Driver's License. What a weird stepping stone for him.

Rob has always taken "mug shot" photos for his license - and anything else - so his new photo cracks me up. The gentleman helping us today was VERY patient with all of Rob's involuntary movements, head tilt, closed eyes, moving his gum around in his mouth, and overloading the system by taking too many photo attempts, but he eventually decided this one would work! 🤣🤩

The gentleman hated dropping Rob all the way from a CDL/tanker/etc. to an ID. He kept saying how much he hated to do it. He even took a long pause before he punched holes in Rob's now expired CDL. The finality of it all was a visible weight on his shoulder as he took a deep breath, shook his head, and punched the license. Thank you, kind sir.

Rob said he liked driving dump trucks the best. Even the time he missed a Deacon's meeting because he got stuck behind THREE different cattle drives near Wilsall in a side-dumper. He hated to see his CDL and driver's license go. I encouraged him by saying at least he can still have a Real ID in case we ever fly anywhere (highly unlikely).

As soon as I mentioned flying, he mumbled something about Alaska. He LOVED our time up there. I STILL cannot thank everyone who made that trip so special for us. The anonymous donor who sent us on the trip. All my cousins & family who opened homes, fed us meals, gave us vehicles to drive so I didn't have to move the motorhome around, took us to church, and one of Rob's favorites - bush pilot flight with Bruce over Denali and back. Thank you!! And our friends Chuck and Amy- you MADE his trip with a bucket list day out of Whittier - glaciers, porpoises, otters, salmon...being attacked by seagulls 🤣 AND Chuck and Hunter helping him catch a salmon on a fly rod in the Kenai River. He still talks about it. That is a memory he won't lose easily. There are many others to thank as well. What a great trip that was.

Not sure I'll ever be able to get him back on a plane with all of his symptoms, but at least he now has a REAL ID if we want to try it.

It was a strange but still good day. God is good, all the time. So glad He is the one leading us on this journey and walking us through it step by step. To God be the glory.

Early May 2020

I haven't kept up, but now I think I need to post daily.  So, I'm cruising back through some facebook posts to try and summarize the past couple months.

May.

Took Rob for a scenic drive up Spanish Creek.  It is hard to believe he is paying attention, as he rides in the car slumped over with his eyes closed.  I keep pointing things out to him and trying to stimulate conversation and memories.  Even pointing out bison, he will sometimes look the wrong way.  But, he did get focused in and started chatting and looking at animals.  We saw a big herd of elk and I kept trying to help him find them in the binoculars, but he couldn't do it.  He would look the wrong direction, or too high, or too low. Sometimes he was pointed in the right direction, but he said he couldn't see them.  He kept saying his binoculars were broken, but I could see through them just fine.  He did pretty good for the most part.




In May, as Rob's cognition declined and dementia increased, I started having more anxiety and depression.  I know I need to care for myself as well. So, I determined I was going to get out in the mountains more and have some time to Be Still.  So, I did quite a few hikes.  It was great.  I need to do more!

I've also gotten more diligent about my morning devotions.
Timely devotions this morning
👉 God never changes.
👉 His word never changes.
👉 His plan is always in place.
💥 No matter what is going on in your world.

Rob is getting much more difficult to handle.  His conversations are increasingly just the same phrases all day long.  I keep trying to pull him out of the fog, but he can't see his way out.  It is exhausting.  I feel bad for saying so.  People tell me I am strong, but they don't hear me say "I KNOW you had Meals on Wheels today! I'm the one who ordered it for you!" after he has told me for the 30th time that he had MoW that day. 

I know God is in control and has a good and perfect plan.  But I often lose that in the moment when Rob has told me the same thing for the 40th time.  I'm working on getting Rob comfortable with the idea of having a caregiver come in a couple of times a week.  He had a #2 accident while I was at work...and struggled to clean everything up by himself.  When I got home...it wasn't clean.  I know everyone wants to help us...but who do I call and ask to go clean up a digestive issue?

Hang in there kids....this ride is getting more and more interesting as we go...