April 30, 2020 Dirt Bike Debacle

April 30, 2020

Dirt Bike Debacle

Well…For 3 weeks, Rob and I have been having quite animated discussions about dirt bikes. He honestly believes he can ride one and thinks he needs to buy a new, big race bike.
He is on craigslist 24-7, looking at his dream race bikes. Unfortunately...Huntington's.

I feel like the bad guy constantly pointing out symptoms and reasons why he can't ride one.I'd LOVE it if he could ride like the good old days...but...Huntington's.

My anxiety was thru the roof with these daily conversations. Then he started sending me text messages while I was at work, such as, “can you drive me to Butte” or “he is selling wife bike” (no other info). I continued to try to convince him that purchasing a bike is a very bad idea. One day he sent out a group text to several people asking them to bring him to an address. I asked him why and told him he did not need a bike and I was coming home. I'd LOVE it if he could think through things like the good old days...but...Huntington's.

I told him we are not spending money on a bike he can’t ride. He would pout and stomp and throw things and say, “I can spend all the money I want to!” I would very gently explain to him, that just because we have some money in our savings account, it doesn’t mean we should spend it. I used examples he could remember...We just had to have the furnace repaired. I just painted parts of his truck to get rid of the rust, which included replacing one of the doors. I need to spend more money to fix some other things on his truck – get a new windshield, get a new bug deflector, get the inside detailed, the exhaust leak fixed, and have the transmission checked. We’ll need to get new tires for some vehicles soon, and what if something major happens to a vehicle. There is a reason why we have a savings account – for emergency, unexpected repairs! He seemed to listen and agree with me. He would say, “oh yeah, I forgot about that.” Or “yeah, I didn’t think of that.” Then 20 minutes later start back up with, “there’s a KTM in Billings I want.” – I look….and it’s $6,000 and a 300...way too tall for him.

We are having the same conversations multiple times a day – and if I make him concentrate, look me in the eye, hold his hand and make him focus – he seems to understand and have clarity and agree and make a good decision….but 30 minutes later (or 10), he’s right back at it. I try to describe his symptoms to him, but he will say, “I’m a state champ! I have trophies to prove it.” Yes, dear..yes, you do…but that was almost 25 years ago…and now….Huntington’s.

It was exhausting. I finally compromised and told him he has to prove to me he can ride one...and both feet have to touch the ground. He didn't like that much. He's "never been able to touch, and I can ride just fine." True....but....Huntington's.

Our 15 year old son has entered the conversation more than once, to try to convince him that he can’t ride and it’s a waste of money. He offers to let him try riding his bike to see if he can ride. The excuses start. It’s too tall, it’s too heavy, it’s not a ktm, etc. I tell him we can find him someone with a bike to try out. He could try his dad’s bike. No, it’s too heavy. It has a fat tire. He doesn’t want to ride on the mountain. Etc. I know a lot of people with bikes…but the first person I thought of is his cousin Shawn. Shawn loves Robby and will do anything for him. And Shawn has a wife and daughter with shorter bikes. Rob had a whole list of excuses…he didn’t want to ride them. “I’ve ridden Lindsey’s bike before” (that was at least 10 years ago…before Huntington’s). He repeats this for 4-5 days. Then he says, “I rode Shawn’s KTM 125 at the track before.” “Which track, honey?” knowing full well he means Riverside, which has been closed for – EVER. I said, “That was over 20 years ago.” He is convinced Shawn still has that bike. I told him, again, that it was over 20 years ago. Any excuse he can think of. I don’t push it. If he doesn’t want to ride, he doesn’t need a bike. Then he’s back on his craigslist looking at bikes and trying to buy them. One day he even called a guy and had him hold the bike. I had to call the guy back and apologize. I said, “I’m sure you noticed, but my husband is disabled and has dementia.” “Yes…I could not understand most of what he said.” I continually tell Rob he cannot buy a bike until he can prove he can ride one.

CR would like to go riding this weekend. I ask Rob if he would like me to find him a bike. Of course not. He has been having digestive issues. He has a headache. He has a list of reasons why he can’t ride a bike.

Along comes Friday night and NOW he wants to go riding. I have to send an emergency text message to Shawn…can we borrow a bike? Immediate response – “absolutely!”

He doesn’t even ask his daughter first – Rob is his hero. His dad and Rob taught him to ride a bike. Rob taught him so much. He is not going to say no to his “super hero, ‘Ace’”

I spend all day Saturday rearranging the garage and sleds and four wheelers and dirt bikes and bicycles…then we go pick up the bike from Shawn. I am so happy to see them I give Lindsey a big hug before I remember Corona virus…whoops. We get home, unload it in the garage and prep some gear for the morning.

Rob is so excited he keeps toddling around the house getting the same things ready over and over again. He wants his motocross gear…so into the rafters I go to get it down. He packs and repacks his helmet, gloves, goggles, and pants. He lays all his medicine out across the counter. He repacks his gloves and helmet and moves his pants to a different location. He is raring to go.

Sunday morning, I got up early and made a nice breakfast for everyone to start the day out right. Rob woke up grumpy.  He complained his way through breakfast. I had to go for a walk around the block I was so disappointed. I know it isn't him. It's the Huntington's.  But some days I am tired of "doing everything wrong" especially when I am trying so hard to do it right and make it special for him.

We did Living-room Church (livestreamed church), then loaded up, ready to hit the hills. Rob had to stop and complain about everything. He fussed about his IBS. At one point I walked in the house and he was trying to get into the immodium pills…when I asked why, he said he was constipated. I explained it would only make it worse! Oh those stupid pills. I hide them, I explain them to him, etc. etc…but…Huntington’s.

We are loaded up and trying to leave and Rob decides he needs to eat his hot lunch first. So…we get him set up with some lunch and wait 35 – 40 minutes for him to eat and get through all of his lunch and his get-ready-to-go routines. We are finally out the door an hour later than we wanted to be. We finally get to our riding spot, and we have to unload the wheelers, unhook the trailer, get out the ramp, drive to a mound, unload the bikes, drive back over to block the trailer…

I helped him into his boots and helmet and helped walk him over to the bike. I was very self conscious of the other riders watching me…I’m sure they were thinking “wha the crap are they doing putting that guy on a bike?!” But I put him on the bike and helped get the kickstand up.

I was sure he wouldn’t be able to start it. I held the bike or Rob to help him balance and not tip over while he tried to get the bike started. Then I remembered…he is supposed to prove to me he can do this himself…so I let go and took a step backward. He almost fell over the first couple of kicks, then he actually got it started.

And then….Rob rode a dirt bike today.

For about 3-4 minutes and never getting out of first gear, but he rode a bike today. Then he took a looong break. HS sat with him while CR and I ran down a trail for a bit. We came back and Rob rode again for 5-6 minutes.

That was enough to do him in. He was tired!

So we snuggled him up on the back of a wheeler, let CR hit a trail, and off we all went. It was a beautiful day and the scenery was gorgeous. HS has a special permit this fall, so I kept my eyes peeled for anything elky. Closest we came were some mule deer who absolutely did not care we were there, and a beautiful mountain bluebird HS spotted in a juniper. While riding, he complained of throttle thumb (?? You don’t have a thumb throttle on a dirt bike, but…okay) and we had a great conversation. He agreed that for trail riding the ATV is best for him. He can tootle around in a parking lot, but he recognized that he can’t trail ride. I thought this day couldn’t go better – he got to get out and ride, but also figured out he doesn’t need to go buy a big expensive bike.

CR had a fair amount of homework to wrap up yet today, so we looped around and headed back to the truck. Rob took the bike for one more quick spin. He was very proud that he didn't wreck. He came close and scared us... several times. His balance was bad. His reaction time is nil. His spatial reasoning is gone. He almost ran into a couple things, and he got WAY too close to some other riders, then even rode right under where he was jumping...but...he rode a bike! He was so tired he could not walk straight.  I helped him change his boots and shoes and HS even took the bike for a little spin before we loaded it. 
We had a great time with some mixed emotions...I'd love to see Rob motocrossing or trail riding (with his own brand of extreme) like the good old days...but...Huntington's...yet SO grateful he could put-put around, dragging his feet when he needed to, with a big old smile.

The kids were worried, watching him ride…now he will think he can do it, and will want to buy a bike and they both realize we should not spend the money, and worried about his safety. I told them I would still limit him to a bike where both feet can touch the ground and a budget of $1000…pretty hard to find. After all, this might be the last summer he can ride, and we can always sell it or HS can ride it. It’s more important that he can enjoy one for the summer…but it’s not going to be anything fancy. As long as he can putz around a parking lot and smile.

We weren’t home for 40 minutes and he was on craigslist.

I texted Shawn a thank you and he told us we could borrow a bike any time we wanted…but here was Rob already looking at expensive ktms.

I had to tell him several times…you rode a bike which is fantastic, but you rode for 12 or 13 minutes out of 3 hours. That doesn’t justify spending money to do that a few times in the summer, not when Shawn has offered us to borrow his bikes instead. We can pay Shawn rent or gas and oil and chain lube…but there is no need to purchase a big bike. 

I know it is hard for him. I am trying to make it easier. I am trying to simply reason with him and not argue or fight...Yes, honey, you were the state champion, but that was before Huntington’s. We’ll get you out riding when we can…but…Huntington’s. Anytime you want to ride, we'll borrow a bike and take you to a parking lot or your dad's meadow.
He has not mentioned a bike for 2 days…but he was scrolling craigslist on his phone again tonight. I’m gonna chuck that phone out the window…ha ha Here’s to hoping we don’t need to repeat the same animated conversations for the next few weeks.

April 19, 2020 Dementia and I'm a big meanie

It took me a week to post the April 12th update.

I’m worried it sounds like I am complaining about my husband. 

I love Rob.  Very much.  

But the truth is, about 95% of the time, he is “gone.”

He is lost in his mind somewhere.

Some minor changes in the past week are just changes to his phrases.

Yesterday I was pleased that his new phrase seemed to be asking me if I needed help doing chores. He repeatedly asked me!  I would think of something he is capable of doing, ask him to do it, and he would not answer or respond.  I would repeat it.  No response.  And yet again…no response.  So, I would just do the chore.  An hour later, same exact conversation.  By the end of the day, he asked for what had to be the 10^th time and I said, well, I asked if you could try to do (list of things), but I took care of them. 

He is still thanking me multiple times a day for his haircut and smoothies and socks.  He still tells me whatever kind of bird he sees in the yard, but struggles to come up with their names.  He can remember Robin, so everything is either a robin or a morning bird, no matter what it might be.  Tonight he decided the fat robin was the lady robin because she is fat.  I asked him about deciding someone is a lady just because they are fat.  He said she is only fat because she is pregnant. (????)  Also the man robin has a Mohawk from flying into the window (??????) okay.

 

He stumbles through the house, struggles to sit in a kitchen chair, has fallen on and broken the toilet several times….but has now decided he needs to buy a dirt bike!!!  Oh, Dear Lord, help me.  I always have to be the bad guy and explain to him how bad his symptoms are.  He has no idea.  His involuntary movements are fairly extreme…but he does not know that.  He is wearing a hole in the carpet from kicking his left leg up and down all day long, but he does not know that.  He tells me how hard he works out doing “box squats” every day…but…he is mostly rocking back and forth, barely lifting himself off the couch. 

Here is a video to demonstrate.

 He does not know.  He thinks he is doing box squats with perfect form.

I am not complaining about what he is doing or not doing…I am trying to explain how he is completely unaware of the majority of his symptoms. And then with his cognitive declines, it is like arguing with a toddler.  He WANTS a dirt bike.  I know he is not capable of riding one. 

I am tired of always being the bad guy and telling him that, yes, you are a very skilled and experienced rider, but your Huntington’s symptoms are too bad for you to do these things anymore.

After we got him out snowmobiling, he asked if I saw him “jumping those drifts”…oh…he has no concept of reality…he drove, very slowly, over some drifts…he never jumped any.  Not anymore.  Back in the day, yes – he jumped everything.  But…not now. 

HS drew a special elk permit.  Several times a day he says, “I wouldn’t mind shooting a bear” and “are we hunting at **secret location**?”  I know what he is thinking.  He wants to hunt a spot where we have seen several bears.  But…he can’t hunt!  He cannot walk that far.  He is not capable of sitting still and waiting.  He isn’t capable of being out that late or being that cold. He is not capable of sitting in the truck waiting for us.  He is not capable of hanging out in camp while we are hunting, and even trying to camp with him gives me anxiety.  All of the things he can’t do or struggles with at home every day will only be magnified there.  He can barely shuffle to our bathroom in the middle of the night…how can he shuffle across a clearing to an outhouse?  He is always cold.  The wind is always blowing too hard (even if there is not wind).  He can’t sleep this way or that way without it being perfect – a cot and sleeping bag will be a disaster.  He is on a very regimented schedule and needs special foods. This just isn’t going to work…but then he says for the 5^th time in an hour “I wouldn’t mind shooting a bear” or “I tried calling my dad…I bet I could sleep in his camper.”  Oh, honey...I mean…we could try it, but it’s not going to work.  And the LAST thing I am going to do is hand him a firearm.  I keep telling him that I trust HIM to be safe, but I don’t trust his involuntary movements.  He argues.  4 to 10 times a day.  About shooting a bear and buying a dirt bike. 

We took him on a scenic drive tonight.  He mumbled something about Ross Pass or Ross Peak at least a dozen times or more, even when we couldn’t see it.  He tried to telling hunting stories about Ross Peak, but was getting his stories mixed up.  I pulled over when we saw some elk and he wanted to glass them, but he couldn’t figure out how to look through the binoculars.  We tried several times and he kept saying – “I can see them better with my eyes.”  But he is convinced he can go hunting.

We’ve been watching Randy Newberg’s On your Own Adventures recently.  Sometimes he uses his friend’s llamas to pack elk out.  One night I was trying to stimulate Rob’s brain and have a conversation with him and keep him focused on something – plus – he is very excited about HS’s tag.  So I told him, I’d like to go back into here and here.  “You nnnnn mmmls” what?  “You neeeemuuuuls” “We need mules?” “yeah…mumble mumble something or other”  So, I told him I know lots of people with horses I could call, including his dad, who also drew the tag and will probably be hunting with us.  We even know someone with a string of pack goats.  Rob says, “you nnneeee RRRndy” huh? “RNNNNNDY” Randy? Randy who?  “yeah. Call yerrrr frien Randy. Use his lllaaammmmms” Oh dear.  He wants me to call Randy Newberg and use his llamas.  I tried to explain Randy is not my friend, he has a tv show, and started to explain the llamas are from Idaho…I just gave up.  Does it matter if he thinks Randy is my friend and all I have to do is call him and he’ll show up with llamas?  No harm done – he can believe what he wants to.  

It is Sunday night, I am working on getting ready for the week ahead of us, and as I tucked him in bed tonight he said, “I wouldn’t mind looking at a dirt bike this weekend.” “Oh, honey…you can’t ride a dirt bike” and he starts mumbling about all the excuses and arguments against the same things every time.  “My balance is fine.” (he can barely get off the couch and walks like he just drank a bottle of whiskey) “My hand is good” (the one that is always up over his head or rubbing his eye or touching his forehead every 10 seconds) How will he run a clutch? How will he use the brakes? How will he shift with his foot?  But here we are…I am in the middle of helping him get in bed so he doesn’t fall out, and pulling the covers up for him because he can’t do it by himself, and he is trying to convince me he needs a dirt bike.  I pull the covers up and he throws both hands in the air and starts gasping for breath, shaking his head back and forth like he is drowning.  The covers are not over his face or even near his nose and mouth.  Then he takes a deep gasp of air and starts telling me angrily, “I kinnnn rrrrda drrrrr bk!” (I can ride a dirt bike) Sigh.

I’m tired of being the big meanie…but…he has no idea.

This…this right here, is reality.

Just one of Rob’s involuntary movements is this foot…all day long…

Carpet fuzz

He is wearing a hole in the carpet…I vacuum the frayed carpet fuzzies up every 3 or 4 days.

April update. Dementia and the elderly toddler

April 12 

I have a hard time answering people when they ask how Rob is doing.  I sooooo appreciate their asking (so don’t stop), but I have a hard time knowing exactly how to answer.  I want to be real.  To be honest and truthful and descriptive – so that others understand this disease and what our life is like.  However, I do not want to merely sound like I am whining about things or complaining about symptoms that are out of Rob’s control. I don’t want t sound like I am angry with him or throwing him under the bus.  But I do need to attempt to be real and honest about his symptoms. There is a fine line to walk between complaining and explaining.  It is one of the reasons I have not started a Caring Bridge page, and also why I do not update this blog as often as I should. 

But…here it is, already April, and I said I would try to keep everyone updated more often. 

In mid-February we upped Rob’s antidepressant.  It was an immediate relief from the negativity, the curtness, the misguided anger, the constant criticism and complaining, and the general hatred of everything and everyone.  What a relief!  Rob is still confused, but at least it is a happy confused.

His cognition levels have declined substantially. He is much more confused. He has a difficult time knowing what is going on around him or understanding a conversation.  Combined with a constantly fading memory, he has a hard time.  He has a very difficult time communicating – partially because his cognition level most often about that of 3 or 4 year old – but also because he slurs his words or talks in circles.

Because of his difficulty swallowing, I have been making him smoothies for breakfast every morning for the past 2 years.  For the past month, every morning he asks me “what is for breakfast?”  I try to make him exercise his brain, so I answer with a question, “what do I always make you for breakfast?”  Some days he will again ask me what is for breakfast fifteen to twenty minutes later.  We will have our normal morning routine, and just as I am leaving for work, he will ask me if I am going to work.  His questions are very repetitive, and they are all things that he knew a month ago.

In the past 2 weeks, he has rapidly declined. He repeats the same phrases over and over throughout the day.  Last week Thursday (April 9), I was tempted to tally up how many times he said the same phrases.  It is almost like he wants to have a conversation, but he doesn’t know what to say, but it is also as though his OCD/repetitive actions include repeating the same phrases.  Quite often, he is simply repeating the same thank you phrases.  Thank you for making smoothies.  Thank you for cutting my hair (I cut it 10 days ago).  What is for dinner? Thank you for cooking. There is a bird. I see a robin.

During the past 2 weeks, our daily conversations follow along these lines. I get up, do devotions, clean the kitchen, check my email, say goodbye to Heidi, then go in our room to get him ready for the day.  He will be dead to the world snoring, but when I walk in the room, he panics and throws the blankets around, “Issssittt sshhshshwer im?” (Is it shower time?)  Yup. He jumps out of bed – but doesn’t have his balance yet and often weeble-wobbles into furniture and walls, then sits back down and takes his socks off while I get things ready for the shower.  He will eventually stumble into the bathroom while I am running the water to get it the right temperature.  Some days he will say “I’m not going to church today” even if it is a weekday.  Other days he will go about his normal routine and into the shower we go. Yesterday he took a tumble in the bathroom doorway, and was in such a hurry to get up, that when I helped him up he started tipping over backwards the other direction.  I’ll have to watch that more from now on.  Into the shower we go, and “thksssss frrrrrr hrrcit” (Thanks for the haircut).  Again…it was 10 days ago…I appreciate that he is grateful!! For sure!  But it is like he doesn’t know what else to say.  He knows that when he gets in the shower, he says thank you for the haircut.  Sometimes, he thanks me 2 times for the haircut in one shower.  Most of the time, we shower with little to no conversation. Somedays he complains about things or asks what I am making for breakfast (smoothies, remember?).  Turn off the water, puts the towel on his head, and “thkkkssssss agin hrrrrrrcit” Yup. 

We go through the morning routines of getting ready. He will often ask about breakfast while getting dressed, or complain about a certain pair of sweatpants.  I need to hide them so he doesn’t drag them out and complain about them!  I move to the kitchen, make his smoothies, pack my lunch and work bag, then I make sure he is ready for the day.  I remind him if it is a Meals on Wheels day or tell him what his lunch options are in the fridge.  He turns the radio on to the Christian station (loudly), puts on his Carhartt vest (he is always cold, so he wears a shirt, a heavy fleece pullover and a carhartt vest with wool socks and slippers for inside the house) and he sits on the couch with his smoothie. Once I know he is good to go, I take off.  Some days he will not have anything to say.  Some days he will say “thkssss frrrr ssssssssmmmmmmmthsssss” (thanks for the smoothies) 3-4 times before I leave the house.

 He will also look out the window and tell me if he sees a bird and then try to tell me what kind of bird, but he struggles to come up with the right name.  He likes the mourning doves that frequent our yard, but 2 weeks ago forgot the word dove so now he calls them his morning birds.  If it is sunny, he says, “I like sunny days.” If it is snowing, the same, “I like snowy days.” But some days, he does not say a word, even when I tell him goodbye and to have a good day.  (Or, he will say, are you going to work?)

If I am at work, I don’t hear from him until 3:06, when I get a text “How’s work going today?”  I get this text every day at the same time, even if I am not at work, if I am in the kitchen working from home, if it is a weekend and Heidi and I just left the house to go to the store (and told him where we were going), or I walked outside to get the mail.  No matter what I tell him in my response (I swear I could say there is an angry grizzly bear in my office) he always replies with “okay dokey artichokey big fat blokey smokey” or a combination of those words.  He used to send a “what’s your 20?” text every 5 minutes starting at 3:30 or 4:00 until I got home, but then I explained that I don’t want to text and drive, so he has not sent one in a while. 

If I am working from home, or we are trying to do something (I took a day off last week and drove everyone to Radersburg for a day outside the house), he will repeat, over and over, all day long thanks for the haircut, thanks for the smoothies, I like sunny days, the Bridgers look nice (even when he can’t see them), there’s a cold breeze, etc.  Some days we get upwards of nearly 20 times per phrase per day.  It can be 90 degrees, stifling and a barely there hot whisper of a breeze or 30 below zero and no wind and he will say, “there’s a cold breeze” or “it’s too windy.”

In the evenings, I cannot even walk in the door from work without him asking who I am and what is for dinner.  Multiple times.  He has to eat at 5:20 on the nose. No matter what my answer is, he will say he can’t eat it because it will make him choke – even foods that he regularly eats and can eat with no trouble.  He will thank me again for the smoothies and the haircut.  He chokes a little during dinner, which makes his nose run, so he tries to blow his nose (he really isn’t coordinated enough anymore), then he tosses his used Kleenex on the dinner table where the food is set and we are eating, then always says “I’ve had a runny nose for 4 years!” Or he will start complaining about the neighbors cars as they drive past the window and why they are terrible people because they have a loud car or a sled deck or whatever.  It all comes down to someone waking him up from his afternoon nap and he will hold it against them for the rest of his life. 

Before we even leave the dinner table, he will ask me to change his socks.  I’m obviously not changing them during dinner, but he knows I will change them after dinner, so as soon as we are eating or getting close to finishing dinner, he starts asking about changing his socks.  I clean up the dinner mess and the kitchen, then change his socks.  He will then say “thkkkssssss chin ssssckssss” (thanks for changing my socks) a minimum of 3 times before he goes to bed. 

His watch beeps at 7 and he stands up and says “its pee time”.  It beeps at 8 and he says “itssssss snck time” Last week for 4 days in a row he said, “well, are you going to get me a snack or not?!” um…definitely not with that attitude buddy – besides right now his 8:00 snack is a glass of chocolate milk that he is capable of pouring.  I hope it does not sound as though I am being harsh or mean or unwilling to help him.  I usually do help him…but even the doctors and his old physical therapist and occupational therapists always said that when there are things he is capable of doing, he needs to continue doing them as long as possible. As soon as he stops trying, it is a task he will lose forever.

There are certain tv shows he likes to watch in the evenings.  He won’t watch tv all day, but that’s the only thing I can do to entertain him in the evenings.  His headaches are worse in the evenings, and if he is tired, so is his cognition.  I’ve tried games and stories and used to read him books, and lots of different things, but he is pretty well done for the day.  I try to keep funny movies and outdoor adventure type shows running in the evenings.  About a month ago we watched a Jackie Chan movie, and he always plays his bloopers at the end of his movies. Someone was supposed to say turtle, but they said turkey.  Rob says, “Yeah, turkeys are okay, but they have color vision and something something about turkeys.  I like blue birds.” We cannot follow his thought process, but at least it was happy.

Some days he sits and complains about the people on the shows to no end.  We are watching a hunting show and he started yelling about sleeping in tents and it’s cold and he hates it. (he never hated sleeping in tents before) So I tell him, well, no one is asking you to sleep in one, so you don’t have to worry about it. He yells, “I’m not doin it!” then he starts saying that the guy on the show is a horrible person and a horrible hunter because he shoots a hoyt bow and blah blah blah.  I turn the tv off.  He starts yelling at me something about a snowplow.  “What?” after that basketball game!!” “What about a basketball game?” “AFTER that BASKETBALL game! You did it!” I have no idea WHAT he is yelling about. Then he starts yelling about where I am going to sleep.

I have been having a terrible time sleeping in bed with him.  He takes up the whole bed – sleeping like a starfish – and then spends all night hitting me, kicking me, slapping me upside the head and shoving me out of bed.  I “sleep” on the very edge of the bed as far down in the bottom corner as I can and even then he is violently smacking me. I have a constant headache from clenching my teeth all night (and that’s with a dental mouth guard) and my shoulders are both going bad from balancing on the edge of the bed. So, out of the blue, he told me I could sleep on the couch.  I was in shock.  I had been planning on trying to have a discussion with him about our sleeping arrangements, but needed him to be in his right mind – if he is talking about bluebirds and sunny days and 10 day old haircuts, I can’t have a discussion with him.  I slept like a BRICK.  He said he slept fine because I turned the heated mattress pad way up without me in bed.  I slept on the couch a second night.  MARVELOUS, glorious sleep.  Then he went into this tirade about me sleeping in bed and how he needs my body heat.  So, I lay in bed now…I have to take a benedryl or Nyquil or something or I don’t get any sleep.  He talks at me (usually yelling at me in a whisper) about something all night long.  I can’t hear him or it doesn’t make sense.  One night he woke me up from a dead sleep, calling me horrible names, and accused me of hitting him 3 times in a row.  I was sleeping on top of my arm to keep from falling off the bed…so….??  I can’t be mad at him.  He doesn’t know the difference between his dreams and reality.  OR tv and reality. Or a story he heard one time and reality – OR that it happened to someone else and not him.  

  

BUT….now I’m off topic and in danger of complaining about things he cannot control.  The main point of this was to describe his cognitive declines. 

As I tuck him in, he will either say “thanks for the smoothies” or thanks for breakfast or thanks for the haircut.  Sometimes he will tell me that I need to go to bed right now (he goes to bed at 9, I need to stay up and finish chores, talk to the kids, get on the computer and do my job remotely, etc.). 

He has so many mental lapses.  He can barely have a conversation other than his repetitive phrases.  Sometimes he can try to tell a story, but he starts a story and goes down 8 or 9 rabbit holes and we never get where he started going.  I miss being able to talk to him.  He has no clue what is happening in the world or our lives.  I try keeping him up to speed but he doesn’t understand.  Every day he asks about church, the pawn shop or other places and I keep telling him they are closed.  I mean – Cody is home all day and not at school but he still doesn’t know what is happening.  It would be lovely to have my Rob back so I could talk to him more than “Thanks for the haircut and I like bluebirds.” Or describing what he sees out the window every 5 minutes.  “It’s snowing.” “It was snowing but now it stopped.” “It’s snowing” “It’s sunny, but it should be snowing.” “It’s snowing again but it was sunny.” “I like sunny days.” “I see a bird.” “I like morning birds” “It’s snowing.” “Is it tax season?” (His friend Ray was here 2 times to pick up and deliver our tax paperwork) “Thanks for the smoothies this morning.” “thanks for the haircut”…

I have been working from home more than usual…but when (if) things ever get back to normal and Cody is at school and Heidi is working…I’m going to have to have someone come keep him company during the day.  Companion care, in home care, whatever – he is not able to keep track of what is happening around him. Most days he has the cognition level of a toddler or pre-schooler, but he has the physical limitations of an elderly person. That is the truth of where we are right now.