Anniversary Camping Alone July 2023

 Chapter 14?

 (Of the book you all want me to write?😆)

Last week I saw a campsite up Hyalite up for grabs for 20 bucks, and thought, why not?! So I worked a half day on Tuesday, loaded up my car, picked up an inflatable kayak for $20 and headed out of cell range.

Back in the day, my mom and dad gifted us a camper when Heidi was a toddler. We used to camp a lot, trying to make memories. We never camped in a campground though (other than the giant RV I drove all over Alaska). We outgrew the camper, and trying to get Rob in and out that last time in 2018, I realized we couldn't use it anymore. We parted ways with our camper. I didn't know how to keep our family traditions alive and together, so we tried camping in a cabin but it was hard for Rob. It has been years since I've been camping, (other than the backpack trip to Mystic Cabin with Yvonne last summer). 

Now, I was empty nesting, and a campsite was available, so…why not go?! It is time for me to go ahead and do stuff, even if it is alone. 

God blessed me with beautiful weather. Hyalite was gorgeous! I found my campsite around the corner and tucked in the trees away from the giant RVs, and popped up my new (Facebook garage sale) tent. 

Then, being too Dutch to purchase firewood, drove up the road to find some dead fall. I remembered the days of pulling into some dispersed camp site in the mountains and sending the kids out to gather wood. They would come back, arms loaded down, or dragging a big log between them, yelling, "we found the jackpot." Instead, I was on my ow, but I suppose they are too old to run around yelling "jackpot!" these days. I sawed a log into pieces and loaded a big cardboard box up with good sticks…Then realized it was going to make a mess no matter how I put them in my car. 🙄🤦‍♀️ oh well! Good thing I have a husky liner!

I quickly ran back up to my campsite, unloaded the firewood and drug my husky liner out and shook it off. Then down to the lake I went.

I had been a little worried about carrying and pumping up the kayak with my restrictions but it was easy peasy. I could plunk it on the ground, and it didn't take too many pumps to air it up. Off I went, paddling, fishing, and just staring at the mountains from the peaceful water.

Well…about that…it wasn't the calm evening lake I hoped for. The wind wasn't too noticeable but enough that there were pretty big waves on the lake. When I borrow the plastic kayaks, they sit a little lower in the water and cut through the waves. The inflatable kayak sits on top like a tiny raft. So I was bucking waves most of the time I was rowing, and I drifted back pretty quick anytime I stopped padding to fish. I didn't mind though, I still loved it. 

After a couple hours, I let myself drift towards the inlet, where I could see Hyalite Peak better, knowing it was going to be some work getting back. By now the waves were almost white capping, and I still needed to make dinner before dark, so I started "rowing" against the wind and waves for shore. 

When I finally beached next to some paddleboarders, the guy commented on paddling against the wind. I agreed! I was tired! The kayak rolled back up easily and I was going to put it in my car, but decided it was going to be over my weight restriction, so I had the guy pop it in my trunk for me. See, mom, I'm being safe! 😉

I probably pushed it a little, but I need to keep pushing or this is as far as my recovery will go. I need to "slowly return to my normal level of activity!"

I had a lovely campfire (one of Rob's "white-man fires") and what Rob and the kids would call a char-b-qued "dog dog." I had to smile just thinking of them. I was enjoying the peace, staring into the fire. Every so often a couple or family would walk by, look over and wave. I think some people were surprised to see me alone. As I watched them all go by together, I wondered if I should feel sad that I'm alone...and I did, for a while.

Obviously, I'd rather have Rob there and healthy, and my kids there to spend time with, but I was ok. I'm never truly alone anyway. God goes before me. As a Christian, I am the bride of Christ. Jesus is there. He is my protector. He is my provider. He is my Wonderful Counselor. He gave us the Holy Spirit to be our Comforter. I would love if Rob or the kids were there, but I'm learning to be okay even when they aren't. 

We used to always camp on our anniversary. This fact wasn't lost to me, as I sat there alone. It wasn't our anniversary yet, but it will be soon. 

Sitting at the campfire, I pulled out some funeral planning paperwork to fill out for both Rob and myself. After our hospice scare, I thought, "I'm not ready to plan a funeral in the middle of all these emotions!" so I want to take care of it when I'm not in the midst of great loss.

Not that there is a ton of planning that needs to be done. Rob already told me what he had wanted, so I just needed to get it out of my notebook and on record with the funeral home. I want to save myself the bother of planning a service while I am in the midst of mourning. I also wanted to write down my basics and wishes, so if/when something happens, my kids don't have to deal with it. By filling it out now, there is no pressure, so when I'm in the right "emotional space" I can fill out the details. The campfire seemed the right space. 

A couple walked by with their dog, holding hands. I looked down at my paperwork and thought…well…this is weird. I should probably feel traumatized, but sometimes, taking care of the hard now, makes it easier in the long run.

Then I remembered how, when Rob was diagnosed with Huntington's, we rented the Spanish Creek cabin for our anniversary and brought a stack of legal papers to go through and discuss. No one wants to have heavy, hard conversations, especially on their anniversary, but what better place to do it than next to a mountain stream? It was also the best thing we could have done. It allowed me to know, exactly, what Rob's end of life desires and wishes were. 

What medical care does he want? What doesn't he want? We even discussed his funeral wishes. What a lovely anniversary, right? But it was. Nothing brings you closer than setting yourself aside, caring only about your spouse, and having those hard conversations, with love, with compassion, with hearing each other's desires, praying for God's guidance together and knowing we will cherish the good times and face the hard together. 

Lost in memory, gratitude, and the flames, I looked up to see the sun was going down. I planned to get up fairly early, so I'd best get at it. I shut camp down for the night, crawled in the sleeping bags, and slept fantastically. It was pretty chilly, but I had lots of layers and blankets. And for those worried about me alone in the "woods" I was in a campground. I had bear spray (for man or beast), I did the carabiner on the tent zipper trick, and I kept my key fob within reach - setting off my car alarm would definitely rouse the neighboring campers. 

Even though I was up at 5 and hoped to get an early start on my day, I decided I should sleep in a bit longer. Afterall, I was camping with no overwhelming responsibilities waiting for me, or cell coverage for people to access me. The pressure of getting down the trail did drive me from my cozy bag in a couple hours though.

 It was already warming up to a tropical 44 degrees. It took me significantly longer to tear camp down and pack up, because dew covered everything, slowing me down and soaking me pretty well. I ate a quick breakfast of jet boil instant mocha with prepacked eggs and bacon then drove off to the trailhead. 

I looked for the SERVE kids, but had beat them there. I wanted to make sure I brought plenty of water, food and safety essentials, so I bumped up in backpack size. Unfortunately, I bumped up straight from small to overnighter, skipping a midsized day pack. The empty big pack is probably nearly as heavy as my small pack. It didn't feel bad in the parking lot or the first few miles, but it was definitely a mistake by the end of the day. I keep forgetting what "85% healed" looks like. Whoopsie Doodle.

I am also convinced the hiking book LIES on mileage. My GPS always reads farther. I tried to stick to the trail and skip most of the side shoots to the numerous waterfalls. There was also some major dead fall as high as my head, with no way underneath, that I had to climb up and over. 

There are always water crossings on the trail, but the water was deeper than expected this time. Rob always emphasized the importance of taking care of your feet and keeping them dry. I know I wasted a good 45+ minutes bushwacking up and down one creek trying to find a way over without getting soaked. Heidi says my water crossings are "slightly risky" so she would have loved my very sketchy rotten log. Then I had to fight deadfall to get back up to the trail. Probably not the best choice but hey, my feet were dry!

 Pretty soon the water became unavoidable and I had to just cross right through the waterfalls. Not surprisingly, I was delighted by my first snowdrift. When I got to the lake, my GPS already said 7 miles. It is supposed to be 10.9 round trip. Hmmmm.

The lake was beautiful as always! I offered to take a picture for a couple who arrived at the lake just before me. He told me it was their 25th anniversary. What a blessing! I told them it was almost my 26th. He offered to take my picture and I said "great! Now I can show them to my husband!" He asked why he didn't come with me. I told them he is in a memory care facility, but God is taking good care of us and we are very blessed. They heartily agreed that God is in control and told me to have a blessed day. How could I not, out here in His creation?!

I ate my "snacklebox" lunch in the not so peaceful, very mosquitoey lakeside, then decided to walk around the lake. It looked awful shallow to attempt fishing. I imagine it freezes solid in the winter, so instead of fishing, I wanted to get close to the cliffs. It's so beautiful and peaceful there. I praise God for His power, majesty and might as seen in the beauty of His creation. 

As I stood at the lake, soaking up the beauty, it dawned on me. The last time I hiked up here was several years ago with "my hiking ladies" (Kelley Halle's Walking in Faith group). At that time, I was really struggling with Rob's care at home as his symptoms progressed, while still trying to work full time and be a mom. I had been sleeping on the couch for about 6 months so far. I was going to need an in home caregiver once school started. Rob was having trouble eating. There was so so much to handle. 

I remember Michelle Leum and a couple other ladies told me I should start looking into a care facility. At first, I was resistant…a facility was never on my radar or part of my plan, but I also didn't expect his dementia to outpace his physical limitations. Michelle told me it's a good idea to at least tour them, pick one, and get on a waiting list, so in case he had another drastic change in symptoms (as happens with Huntington's), we would be ready. She also said I could be on a wait list and never use it. She knew someone on the top of a waiting list who had been turning down openings for over a dozen years. There was a lot of discussion and "group therapy" for me as I walked with and talked with different ladies throughout the day. I teared up as I remembered their love, compassion, advice, and prayers as they (literally) walked with me through another stretch of this long journey. I appreciate you ladies more than you know! And look at where things are now...look at Rob now...it feels like no time has passed, yet also an eternity has passed since that hike. So much has changed. What would or could the current me go back to tell that me? It will all be okay. God has it all under control. You will do fine under the Shepherd's care. My gratitude for my Savior and my community of believers is overwhelming at times.

I looked around the cirque. I knew I was way WAY over my time frame, but I needed this time to recuperate and reminisce, so I adjusted my expectations. My kayak rental was going to be late. Oh well. I was here, thinking, praying, healing, and I needed to be smart instead of pushing too hard down the trail. I made my July snowman from one of the smaller drifts, took 1000 pictures for Rob, looked at my watch, then headed down the trail. My GPS read 9.1 miles at the 1st switchback going down. Not exactly 10.9 miles round trip…I was tired, but not exhausted. I was already dreading the last few miles, though. I may have bitten off too much…but there's only 1 way out, and it's on my own 2 feet! At least it was downhill now. I'm sure Rob would have checked me before I even left the trailhead, to make sure I considered what state of recovery I am in before hiking too far. Well..I gotta learn on my own sometimes. 🤷‍♀️🤣

I purposefully didn't stop for pictures on the way down. I should probably get down to cell coverage and check in with people. In fact, for all I knew, Rob had suffered some kind of mishap or setback and Spring Creek couldn't get ahold of me. Hiking out was fine until the last few miles. My legs and wet feet were shot. My plantar fasciitis was complaining rather loudly. It stinks getting old!

I slowed down, took several breaks, ate the last of my food and drained my last water. I had plenty waiting for me in the car and I would get there soon enough. That last giant deadfall however…I stood staring at it and thought, "Lord, This is going to do me in…get me over this one!" A college kid on a mountain bike laughed about the size of the deadfall, then picked his bike up with one hand and climbed over. Thanks for making me feel old and weak, dude! It is higher than my head! I managed to get up top, then sat and rested before dropping off the other side. I was very careful not to strain anything I shouldn't. I was so happy to be over that thing! Then I plodded on down to my car. I immediately dropped my pack, peeled off my socks and shoes, slipped into my flip flops, drank 2 bottles of water and ate a bunch of camping food. I plugged my phone in and checked the GPS. 16.4 miles. What on earth? "Slowly work up to my normal level of activity?" Ummmm…sure….whoops! 🤣😆  85% Julie...85%, not 110!

I wasn't going to make it to cell coverage in time to call on my late rental before they closed, so I decided to enjoy the beautiful drive back out. I was sure the SERVE kids had already left, but I was watching for them until I drove past a car on the side of the road with a couple sitting next to it ..was that…Pastor Tim and Heidi??? I slammed on the brakes, popped her in reverse, whipped a u-turn in the middle of the road and parked like a tourist, sideways in the middle of the pull out. Sure enough, it was them! We sat and chatted while I stretched my legs and recovered a bit more. I kept apologizing for parking like an idiot to anyone who pulled into the turnout and they commented on my license plates so I told the story of Rob saying, "Look out Mister, she earned these plates!" as I pulled into a restaurant parking lot (the guy was 20 yards away, for goodness sake!).

I sat and told Rob stories with Tim and Heidi for quite a while before deciding I had better get to cell coverage and check in with people before they send search and rescue after me. 

The closer I got to cell range, the more I worried about what could have happened to Rob or any other family member while I wasn’t rereachableI worry more about what happens to everyone elsebwhen I'mgone than I do about myself, alone on another adventure! Thankfully, the most pressing messages were that the SERVE kids would be arriving to do yard work for me in the morning and the kayak rental place looking for the kayak and stating I'll owe a late fee. There was also a new note in Rob's chart from his Doc, going over his most recent observations and Rob's geriatric symptoms. I didn't notice a couple of missed calls from Spring Creek...when I'm out of coverage my missed calls and voice-mail go into cyberland.

They did try to reach me at 11 pm while I was in the shower. Rob had fallen 3 times that day. He won't stay in his wheelchair. Or he slides out of his chair and hits the floor. I was going to call back but decided I could just chat with them in the morning. 

I was home. I was well rested (but my legs were trash), and my cup was overflowing with blessings from God. I so needed the respite from life the last few days had provided.

Thursday. 

As much as I wanted to sleep in, and as scared as I was to attempt walking, much less working out, I still rolled out of bed and went to Cami's class that morning. I figured it would help loosen me up. We started immediately on legs and glutes, followed by weights. Great! 🤣 But it was good for me and better than not moving at all. 

I made it home and showered before the SERVE team arrived. While caring for Rob, I ignored several problems/projects on the house (not just my health). Now I am looking around thinking, "I should probably take care of ____ before it becomes a problem" (like cysts that are actually carcinoma!) But, I also can't lift enough yet to do some projects alone, and don't know enough to fix others.

I am incredibly grateful for the SERVE kids who came to help with some landscaping. We never finished putting a border around the house (I would just spray it with roundup) but between the mud and the neighbor cats, it was time to do something! Now I have a rock border around the house and a tree island! They could have helped redo my "tree circles" in front, but I haven't decided what I want to do there yet, as I still need space to drive a four wheeler around back. 

I needed to go to work and couldn't stay with the teams. I went to work, then went to Spring Creek to pick up Rob and talk to the nurses. Rob was more responsive on his ride on that day! He walked out the door with a smile. We drove a lot of gravel roads in the valley, eventually seeing 2 tiny fawns with spots directly in the road not 10 yards from my car. (Not fast enough with my camera) Rob said they were "verrrrrry cute." He also said "they are, uhhhh whitetails" then the doe scooped them up and back out into the field. I was excited he said so much and tried to get him talking more. No luck. 

I told him all about my camping, trying to spark memories (like butt fishing in Hyalite Reservoir, etc) to get a response. He grunted when I said I tried to keep my feet dry but had to walk through water. It wasn't until I said I wasn't sure if there were fish in the lake because it is so shallow, and he said, "what, uh….lake was that?" So I told him Hyalite Lake again. He rubbed his head like he was thinking. I said it might freeze in the winter. No response. I asked him if the time he ended up underneath his upside down sled in the creek up Hyalite was in Hyalite Creek or headed up to Emerald and Heather, and he just mumbled "yeah." I'm forgetting too many details of his Rob stories. 

 Later some horses in a field really caught his attention. I pointed at a dark one and asked, "What was your mom's big black horse's name again?" He said, "I think it was…uh…Maggie" (No, Maggie was white, I think his mom's horse was Moriah) Then he said, "she died, in, ahhhhhh….childbirth…ot was in the summer....I like making snowmen…and goin fer long walks." What?! All these sentences at one time? So he WAS listening earlier when I was talking about my hike and my July snowman! Then…he was silent the rest of the way back. I think I got a grunt when pointing out a hayfield. 

In the meantime, one of the leaders of a serve team called to tell me where they put my scissors. It was the same team that had painted Tana's deck, so I was sorry I missed seeing them again. 

Friday

Heidi was flying home on Friday, and more SERVE kids were coming to finish the weedscreen and rock work, so I decided it was best to set up my laptop and work from home. I also needed to set my tent back up so it could dry out before I repacked it. It is good to have Heidi home!! I did realize though, that I haven’t bought groceries in…weeks! Better grab some tomorrow. She said she opened the fridge and it was "just crickets."

Saturday

I spent Saturday doing chores and taking Rob for a ride. He was very lethargic, withdrawn and nonverbal today. He needed his wheelchair and standing up seemed to exhaust him. I only got a couple of "yeahs" as we watched guys hay. And a yeah when I asked if our drive was too long and if he was tired. He went straight to bed when I brought him back. I tucked him in, then shut the door. Every time I look at his picture outside his door, I am surprised to see how drastically he has changed in just 2 years since he has been there. And I thought he looked bad then! Oh, Rob! Poor guy. I feel so bad for him.

Rob used to say he has no regrets. He lived a good life. And if just ONE, just one person could be saved by watching our story, it would all be worth it. Will you be his "Just One?" I pray you are.

God bless you, and keep you, may He make His face shine upon you, and give you peace. 

#adventuresofacrazywife #lifeasaHager #gratefulthankfulblessed 

Caregiver Update

Things are moving along on the part time caregiver.

Sometimes it seems like it is taking SO long, and other days it seems to be happening quick.

Claim paperwork was sent in to my long term care insurance and we met with a licensed in-home care company. The meeting went fairly well. Rob seems to be on board the more we talk about it.  Well...the more we talk AT him about it.  He doesn't say much, but he isn't opposed to the idea.  The case manager had a lot of extra ideas for keeping the caregiver busy while they are watching Rob - stripping the bed and washing the bedding, doing his laundry, prepping meals, light housekeeping, etc., in addition to taking him for walks, getting him to talk, taking him on scenic drives, and playing cards with him. I felt like so many of the ideas would benefit me more than him, but then I realized that it IS helping him if I have help taking care of him!  He needs meals - I am happy with cereal or a salad.  He needs the bed changed (he sweats a lot at night even though he is cold), without me doing it every Saturday and being grouchy about it.  He needs his laundry done - goodness - with 2 pairs of socks, sweat pants, a t-shirt, a zip up fleece and a vest every day - he creates a LOT of laundry.  The hamper fills up every other day.  He needs to be in a clean, safe environment.  I don't have to be the one sweeping up the floor and cleaning the table and sink and counters after every single meal he eats.  Heidi and I get SO tired of sweeping under the table several times a day.  He needs someone to talk to him and get him out of the house instead of me sitting at the kitchen table saying "AH - don't talk to me, I'm trying to work!"  So, if she can pop in some laundry and sweep the floor and start dinner while she is entertaining him - that all helps HIM.  Somehow, I feel guilty - like - surely I can do all this myself!  I should be able to change his socks and do his laundry and talk to him...but...not while I am trying to work from home, or even just need a break in my day!  

So, we signed the contract - if I end up making a mistake - well - then we give them 2 weeks notice and cancel the contract.  I felt good.

But then that stupid anxiety kicks in for the next several days.

Am I spending my long term care money too soon?  

What if I spend it all before he needs to be in a facility?

What if the caregiver brings in Covid? - not too worried about the Covid - but the repercussions - if they bring in Covid, then Heidi would have to miss work for 14 days at her new job, C would have to miss school and sports until we are cleared to go back.  I would have to miss work until cleared to go back.  Sigh.  What a mess.  

What if they steal?

how will Rob do?

What will they think if they take him for a scenic drive and he is slumped over not looking out the window?  Some days I wonder if it is worth the time and effort...until he says, "Thks fr scenc drv" 87 times that night.  

What if

What if

What if

STOP IT!

I know better than to stress.

I trust God COMPLETELY!

So I get under control, but still have momentary surges of panic - what if I am doing the wrong thing? What if I am making a mistake?

And then, it is almost like God answers me with Rob's symptoms.  I work from home a few days, and Rob has some bad dementia days.  He makes no sense.  I can't understand a thing he is trying to tell me.  None of his words or sentences belong together.  He spends the entire day just repeating his same old phrases over and over all day long. He also asks me the same questions all day long.  "Are you working?" "Are you working from home?" "Are you going to work?" "Are you working?" "Are you working" If I say, "maybe I'll go for a walk or a bike ride just to make sure I get a lunch break" then he will ask me all day "are you going for a walk, are you going for a bike ride, are you are you are you are you?" Once I return home from a walk or jog or bike ride or the store or the mailbox or the back y ard, he will ask me for the rest of the day and into the next day, "did you go for a bike ride? did you go for a bike ride? did you go for a bike ride?"  I went for a bike ride yesterday at lunchtime.  He asked me 25-30 times if I went for a bike ride after I got home.  This morning, he has already asked me twice if I went for a bike ride yesterday. Then he asked me if I worked from home yesterday or if I went to work.  WHY does it matter??  He also repetitively tries to repeat facts about his day. "I think I took a walk." (Yes, I took you) "I think I went for a drive" (yes, I took you), "I'm retired" "Is it Monday?" "I like Meals on Wheels" "Are you warm? I'm cold. I have Huntington's and you don't"  "Are you going to the bathroom or am I going to go?" (You do you, man - if you need to pee, go pee - it has NOTHING to do with me.) "Are you using a fork? I like spoons."  I ask him a question - pick one of the above phrases and that will be his answer.  He doesn't say anything except the same phrases.  He also walks through the house whispering to himself.  "yeahs, so...I guess..." You guess what?  He can't answer that.  

I'm home, I can see how he spends his days. He spends a lot of time slumped over on the couch listening to Christian radio. At 10 he eats a snack and complains about being cold. I make him sit outside in the sun.  He's still cold.  At 10:30, I look up from my computer and he is walking in circles in the living room...hot laps, around and around the living room. Why??? He thinks it will help him go to the bathroom. He goes in the bathroom, falls, and busts the toilet off the mounts.  sigh.  at least I don't have to clean up #2...at 11, he tries to do his "PT Exercises". I've posted them before - but - you guys!  Its getting worse!  Lunch, nap, a walk, a scenic drive, dinner, little house on the prairie, and then meds.  He gets ready for bed and comes out to ask me to tuck him in but instead says, "Hi Heidi, are you going to bed?" (umm...no...), "I am! I like sleep!" "mumble mumble mumble" (what?) "no" (no what? what are you saying no to?) "I like meals on wheels" Heidi and I laugh..."mummble mubmmmmble tuck bed" So, I go to tuck him in bed and Rob says, "I went for a walk today, did I, yeah, I walked today, it was hot." (I know, I was there, I took you) He scratches his head and rolls onto the mattress, "I went for a scenic drive today I think" (Yes, I was there, I took you) "giggle giggle, oh, yeah, I'm retired."

I see it every day, and yet, it is still shocking. I start to think he needs some serious dementia care - more than we can handle at our home, even with a caregiver. But he isn't ready for a facility...but...I'm not sure a part tie caregiver is enough.  So, then I stress more, because I think he may need to be in a memory care facility fairly soon, because he is completely losing it. And what will people say? What will they think? How DARE I put him in a facility instead of caring for him at home?  But how do we take good care of him HERE?  well - that's not now - that is someday - and we will let someday worry about itself.

Getting a caregiver is a HUGE step...a BIG change!  He doesn't do real well with change sometimes.  We had to reschedule a dental cleaning last week and he had the biggest temper tantrum meltdown ever.  We rescheduled for the following day and I told him if he was good, I would buy him lunch anywhere he wanted to go.  He was good, so I took him to Taco John's.  

The more I worked from home, the more I worried about him and a caregiver.  What if part time isn't enough?  Do I need to start working from home more?  I can't work from home and take care of him at the same time, really. I can be in the house for emergencies, but what am I going to do??  

I have to escape, so I get in the car and drive to pick up prescriptions, contacts and a car wash.  I don't make it a block before I start crying, "Lord, WHAT am I supposed to do? I don't know what to do, Lord! Help me! I need wisdom and strength and peace!"

I am not home for 45 minutes before my phone rings.

It's the case manager for the in home caregiver company. They just interviewed someone and they think she would be a great match for Rob.  She can start on Monday.  

Wait...what?

Monday?

And suddenly, it almost seems too quick!

But the weight lifted off my shoulders is physical.

The tightness in my chest is gone.

Clenching my teeth together stops.

I am okay. Rob's okay. The kids are okay.

We're gonna be okay.

God has it under control.  He has NEVER failed me.  He will NEVER leave me or forsake me.  He knows the number of Rob's days, and holds us in the palm of His hands.  Why doubt? Why fear? Fear is a liar.

So...here we go...Monday is a comin'!

August 10 - more resets...

 Oh dear...

What about that moment of clarity?

Can I get that back?!?!?

Rob wasn't doing great Sunday evening, but we forced him into the car and off to a pond at sunset while we fished a little.  He did enjoy the ducks - he said they are ducky - he ate his snack and shared it with the ducks - he was excited HS caught a fish.  But goodness...he was declining.  I would say he was only about 30% "there."  Friday night he would have been about 70-75% "there".

And then today...my goodness...I don't think he was even 10% "there."

Rob could not say anything to me today except his same phrases.

He has taken to asking me over and over every day if I took a nap.  I keep telling him, "No, I don't take naps" or "No, I was at work all day and just got home" or "when would I take a nap? I was at work."

But...

RESET

"So...you didn't take a nap today?"

NO!

RESET

"Did you take a nap today?"

"nope"

RESET

"So...you didn't get a nap today?"

AAAAGRRRRGGGHHHH!!!!

I am pretty sure he asked me this at least 25 times tonight.

I had also gotten off work early to take C out and sight in our rifles.

I told Rob what road we were driving up.

Why?

Why did I think that was a good idea?

"Are you going up Johnson?"

Yes

RESET

"So, are you going up Johnson?

That's what I told you.

RESET

"Are you going up Johnson?"

YES.

He must have asked me 15 times in 10 minutes.

Why did I tell him anything?

"I'm chilly"

RESET

"I'm a little chilly"

RESET

"I'm cold" (he is wearing 3 layers of fleece and carhart in the SUMMER)

RESET

"I'm a little chilly"

It's amazing how this disease works.

I mean...2 nights ago he was coherent.

Tonight he couldn't get out of a one-sided box.  

August 7 - a moment of clarity

A moment of clarity...

I was busy today, but also felt like I needed to get home and care for Rob, and save the kids by getting them out of the house and away from him.  I got home and made him go for a walk around the block because it was a beautiful temperature.  I chattered at him around the block, and he actually kept up with the conversation for the most part.  He still said "I like that Chevy truck" at the same 3 houses as always, but he was able to laugh at himself as he walked along "leading his own leash and taking himself for a walk." (He wouldn't let go of his sweatpants string!)

I was able to talk to him about in home care and life in general and he seemed to be listening and coherent!  That's rare!  I got him dinner and he was willing to go pick huckleberries. I couldn't believe it.  So...off we went.  He was able to keep track of what I was telling him in the car for the most part.  I couldn't believe it!

We got to the first spot and I asked if he wanted me to set him up in a chair, and so we got him toddled over to the base of the hill...and instead of sitting down, he wanted to help me pick hucks?!  WHAT?!  Now...I couldn't physically get him to the huckleberry plants, but we got him close after a fair bit of work, and so he stood there pointing at plants and telling me to pick them. I wasn't getting much...but we tried.  Then he sat on the ground by himself because his knees hurt, but he didn't complain at all.  Who is this person?!  So, we decided to go to spot #2, and again, he wanted to try to help me pick some hucks.  He came over for a little while, but then he was getting tired, so I set him up in the sunshine in a chair on the road, and I picked as fast as I could. I told him I was sorry and I was hurrying and he kept saying "we're here to pick them" or "that's why we're here"  New words - not the same phrases!?!?! It was amazing! I kept chattering away at him so he could hear me. then finished up, found a game trail and followed it a short way, then stuffed him in the car, gave him his 8:00 snack and we headed back down the road.  

He was definitely not my Rob back again, but he was able to respond, without using the same phrases over and over.  It was a miracle!  I could hardly believe it.  Then, he slumped over in the car seat like usual, looking nowhere as usual, and faded into the fog.  

But, it was so nice while it lasted.

The next morning, he didn't know what day it was, which way was up, or which way was down.  He asked me the same 3 questions all day long. And some of his old phrases we haven't heard in a few weeks are back.  He is constantly asking me about he Livingston Rodeo...and he was cold and he doesn't want to go, and we can't make him go.  I keep telling him...there is no rodeo this year...we are past the rodeo, and no one will ever take you to the rodeo again.  But there goes that dang reset button and 10 minutes later, he is adamantly refusing to go to the Livingston Rodeo and "you can't make me." I swear...I am so tired of hearing about that stupid rodeo!!!  

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.

In Home Care - August 5

 In home care.

I had a dental cleaning yesterday morning.

My gums are getting worse and I’m close to starting to lose bone…which is normally a sign of gum disease and poor oral hygiene.  In my case, the dentist walks in and says, “I don’t think this is a matter of gum disease and poor care, I know your personal life.  And I can’t imagine the amount of stress that you are under.  I think your gums are inflamed from being under constant compression.” He verifies that I wear my mouth guard at night.  Yep.  And verifies that I still clench my teeth during the day.  Yup – but I usually don’t notice until my jaw hurts.  So…I’m going to end up grinding my own teeth off, and destroying the bone.  Because I can’t stop clenching my teeth.

Stress?  Yes.

I’m trying my very best to take good care of Rob. 

I’m trying to give him the best care possible.

But…lately, I have come to realize, that I just can’t do it…

And I especially can’t do it when I need to be at work, to earn a paycheck and keep my benefits like health insurance, DENTAL insurance and long term care insurance!

SO – I’m recruiting help.

I have turned in my claim, signed by the doctor, to start using my long term care insurance.  I’ve been impatiently waiting the response.  My insurance policy has a 90 day exclusion period, so, what the heck, I might as well get started on some in home care.  I’m not sure how I will pay for a caregiver during those first 90 days, but I know God will provide.  In fact, I can take the money out of an account that was donated to us through our church.  I’ve always wanted to keep that money intact and a nice whole, round, number instead of nickel and diming it away to nothing.  But…it’s there to help me care for Rob, so I’ll just have to tap into it and use it, I guess. 

So, I’ve been waiting and waiting and waiting and stressing and stressing and stressing.  After the dentist office, I make a phone call to the in home care company to set up a meeting and care consultation. I might as well get started.

I’ve been really stressed about this decision. It has been really hard to make.  I’m always concerned about making a wrong decision or making a mistake or messing up somehow.  Should I start using the Long Term Care insurance now?  What if I use it all up and run out while I still need it?  What if Rob needs to be in a facility and I’ve used it all up now?  What if I run out of funds?  Why do I worry so?  I am a child of the King of all kings and LORD of all lords.  I know he will provide.  He always has. 

Over a year ago, I had contacted MILP (Montana Independent Living Project), to see if we qualified.  I was excited, because I would be able to pick who I wanted to help care for Rob, and they would pay up to a certain rate.  But within minutes of that first phone call with them, I was told that we do not qualify for MILP.  To receive assistance from MILP, we have to be eligible for Medicaid.  Rob has medicare and also my insurance at work.  MILP said they could help me jump through the hoops of applying for Medicaid, if we qualified.  At that time, they said I would not qualify for Medicaid, because I made too much money.  (that’s the funniest part of this story!)  I looked into cutting back my hours to earn less, but it wasn’t feasible.  So, we don’t qualify for Medicaid, so MILP is not an option, so I have to use my long term care insurance or pay out of pocket (now that is really hilarious!).

I stopped and chatted with my niece after the dentist.  You know…it has taken me too long to get things lined up and organized for in home care. She mentioned that her mom is on Medicaid, and so they can pick the person they want to be her caregiver, and then MILP pays their salary.  It’s like…the stress of my decisions affects my memory negatively.  I completely forgot I had looked into all of this a year ago.  I only remembered we didn’t qualify for MILP, but forgot everything else.  So, when my niece starts telling me about this, and then I pop in the car to drive 40 minutes back to work, I start stressing and obsessing that I’ve done something wrong if she can be on Medicaid but Rob isn’t.  I am 20 minutes into the drive home before I remember that I had gone over all of this a year ago with the MILP people.  Instead, I start wondering if I let something slip through the cracks.  Was I supposed to apply for Medicaid?  I had filled out and turned in everything we needed for SSI disability.  With that, we received Medicare part A.  I had to read through everything to make sure I understand what is being covered, and then decide it’s best to keep him covered with my health insurance from work.

Yeah…so…here I am, leaving the dentist office, where I am told that I am grinding my own teeth off…and…I am now stressed and clenching my teeth all the way back to work.  I also start panicking again about starting to use the money and if I will run out or not.  Only God knows the answer…but I also know I can trust Him to provide.  But I still sit at work researching all I can about Medicaid.  I would love to use MILP instead of my insurance.

Everything I can find tells me I can’t get Rob signed up for Medicaid…so…sigh.

Being a caregiver spouse of someone with Huntington’s involves so many decisions and no guidebook or checklist of what to do. 

I wonder if I should put together a care team of friends who can help me make decisions or give me advice on moving forward.  But who would I ask, and then if I schedule something, we have to all be there.  And the thought of all that can be completely overwhelming at times. 

I guess I’ll just keep plowing forward and wearing my mouth guard. 

We are meeting with in home care next week.

 

     

The Fog...

Rob is lost in a fog.
Most days he is trapped in the fog and can't get out.
Very rarely, do we get a glimpse of him in a brief moment of clarity.

Yesterday...yesterday we had a moment of clarity when he told me to have fun.

But, the rest of the time, he is in the fog.
For a while, we were having the same conversations every day.
Then he began repeating the same phrases over and over all day long.
Now, we are repeating everything within minutes.

So, today I stayed home after galavanting around with my girl for part of yesterday.

I had a long list of chores to take care of. 

Rob's phrases today were: "I'm retired" and "I guess God wants me to be retired" "I have Huntington's" " I didn't get a good nap" and the other usual culprits.

I thought I would try to do something with him and get him out of the house and out of his brain and out of the fog.  A lot of times if we get him out into a different situation or around a different person, he perks up and starts telling stories or at least having a conversation without using the same phrases all day. 

So, first, I offered to take him on a scenic drive to go find a trailhead to a secret lake my neighbor was telling us to fish. I plan to take Cody up there, but I heard the road was washed out, so I wanted to check it out before heading over there. But, we decided it would have been too long of a day for him.  Then he started giving me a long list of excuses, like...I can't hike that far (we aren't hiking, just driving), and he isn't a very good fisherman (we aren't fishing - just driving)...but he wasn't clear on that.  So we scratched that off the list.  I asked him if there was anything he wanted to do today.  He didn't have any ideas.

I started on some house chores and after an hour or so offered to take him on a scenic drive while looking for huckleberries.  I had a couple of places close to the road I wanted to go look at.  He kept telling me that he can't hike and asked me 20 times if it was hot outside. Finally,  I went to the grocery store and came home to work on some freezer meals in the AC and do more laundry and typical house chores. 

He continued to ask me. "was it hot outside when you went to get groceries" (yes, it's 90). "Is it hot outside?" (yes, it's 90), "I'm retired" "Is it hot outside?" "Are you doing chores?" "Are you going to pick raspberries?" (No, I thought I would look for some hucks, IF I take you on a scenic drive) "Is it hot outside?" "We have raspberries in the back yard" "Is it hot outside?" "Are you going to pick raspberries?" "I think I'll stay home" "Is it hot outside?" "I don't like raspberries" "Were you hot when you went to the store?" "I can't hike" "we have raspberries in the back yard." "I didn't get a good nap." "I'm not a good hiker." "Are you going to go pick raspberries?"  "How far away are you going?" "we have raspberries in the yard." "I'm not going!" "Is it hot outside?" "Are you doing chores?" "When are you picking raspberries?" "I can't sleep in a moving car" "I need different shoes." "Are you picking raspberries?"

It did not matter how many times I explained that I am NOT going to pick raspberries.  I was offering to take him on a scenic drive, in the evening, when it cools off.  (He loves scenic drives.)  I want to take you somewhere different, on a scenic drive, in the air conditioned car, where we might see elk, and IF I happen to see huckleberries from the road, I might like to pick some.  He didn't understand.  He kept asking me about hiking in the mountains to pick raspberries. 

Y'all.
Just stop.
You all say "you are so strong and patient and kind and loving taking care of him..."

You don't see me when I finally yell, "STOP talking about raspberries! Forget I even SAID anything!" then lower my voice and say, "I THOUGHT I would be NICE and offer to take you on a scenic drive...and IF I just HAPPEN to see some hucks on the side of the road, I would pick some! But just forget it! Forget I said ANYTHING!"

And he says, "well, I guess, if you really want me to go look for raspberries with you, I could..."
"NO! forget it!"
"well, I'll be hot (the guy wearing 3 layers of fleece on a 90 degree day) and I'll need to bring water"
"We are NOT going ANYWHERE"

He almost did not even miss a beat..."So...are you doing chores?" "Did I sleep okay" "I'm sorry you didn't sleep good." " I have Huntington's."
He did stop asking about the berries...so...there's that.

I am not a patient person.  I need to work on that. 
sigh.

I try, but...I fail!

SO - if anyone is wondering...we did NOT go for a scenic drive and pick any kind of berry that we may or may not have seen from the non-existent road!😆