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!😆

From Panic to Peace

I go through stages of panic attacks and anxiety, and then great periods of peace and strength.

You would think, that while I am being strong, I would not fall back into the darkness of fear...but I seem to climb up the mountains of peace and trust, then stumble down into valleys of fear and doubt and discouragement while on this crazy journey through Huntington's.  I want to glorify God through my journey...and I trust him completely as He leads us up and over and around these mountains, valleys, plateaus and ridges...so WHY do I occasionally go through seasons of anxiety, fear and failure?  Who sees His glory then?  No one. It is frustrating!

Historically, I struggled with panic attacks every morning for 2 or 3 years prior to Rob's diagnosis.  I could see symptoms that no one else seemed to see.  I trusted that God would take care of us, but I was also busy trying to figure out how.  What will we do if he can't work?  How will we pay for our house? How can I take care of him? etc.  

There really was "no reason" to panic...we had always lived our lives hoping for the best, preparing for the worst, and trusting God no matter how things turned out.  

So, even though I KNEW the truth...the uncertainty of the future was overwhelming.  I often spoke up about my concerns and the symptoms I was seeing, and many times I felt brushed off and basically told, "he's fine, it's all in your head" (without saying those actual words). So, I started waking up every morning in an absolute panic.  The anxiety would start before I was awake, wake me up, and then escalate.  Nothing like waking up in a confused panic.  Why am I so scared? What is scaring me?  What's the matter?  Uncontrolled, heart pounding, breath taking, sweating, gasping panic.  Into the shower I would stumble, barely able to stand under the weight of the water until I would usually puke and drag myself off the floor to begin a day.  For some reason, the puking would make me feel better.  Like I was expelling the fear from my body.  But there would be some resentfulness in me as I had to drag myself upright and finish showering instead of remaining a puddle on the floor.  I had people who needed me.  No time to dwell in the fear.  Time to move on. 

I always prayed intently through the panic. And then I was angry with myself for the anxiety and fear - God does not give us a spirit of fear!  Do I trust God or not?? Because I wholly trust Him completely - How can I be worrying and panicking?  It was a crazy jumble of emotions and spiritual battle every single morning.  

At that time, Robs was having trouble working, but he was completely unaware of his symptoms.  He had terrible depression and anger issues.  He came home from work every night throwing things across the house and being mad at his boss or his day or the weather or whatever.  The kids and I had to tip toe around the house.  He was a big scary man to them, instead of the dad that used to be fun and exciting. I was always trying to act as a buffer between him and them...to protect them and shield them from his outbursts.  Things kept escalating as his symptoms increased.  I now he was not a good employee.  I know his driving was terrible.  I know his reaction time was slow.  I know he broke things he was mechanicing on or forgot to complete tasks at work.  But HE did not see this.  He had no idea.  He thought everyone else was being a jerk to him. He was SO angry.

And then...things came to a head...and I had to tell him it was time to get tested.  He was completely unaware that he'd been having symptoms.  I'd been seeing symptoms for YEARS.  In 2012, I KNEW he had Huntington's.  Here we were, 3 years later, and he was completely unaware that he had any symptoms.  As we approached the testing...through a lot of prayer, I got over the majority of my panic attacks.  Then, when we got the test results January 13, 2016, I immediately stopped having panic attacks.  

They came back here and there over the years, as we have had various struggles of living with HD.  As our family has faced various stages of HD, I have gone through various phases of dealing with panic attacks.  I get SO frustrated and angry with myself, because I really do trust God, completely.  But...the panic is there.

Well...here we are, again, living in uncertain times.  I hate this Covid stuff.  I'm not worried about the disease, but I am watching our country lose our freedoms and unity.  America is a disaster right now.  And I have kids, trying to plan ahead for their futures. And Rob's cognitive abilities are on a steep downward spiral while his dementia is ramping WAY up. I have to figure out how to care for him. So...the anxiety is back. And I am frustrated.

How often, when we read the Bible, do we not feel like yelling at the Israelites or the Pharisees or the Disciples - DON'T you GET it YET?!  How did you NOT learn this lesson the LAST time?  As we watch them go through the same struggles, doubts, fear and failures in their faith over and over.  Guess what?  That is ME! I'm the one who apparently can not remember the lessons I just recently learned! So go ahead and slap your head and say, "Don't you get it yet?!" Because apparently, I haven't!

Yesterday (July 31), I again was panicking before I was even awake. I woke up in overwhelming fear and anxiety.  My chest is tight and I start to try to figure out why I am anxious. I have a tendency to think I am doing everything wrong, or if something is happening, it's my fault. The anxiety is like a weight on my chest, so I think, "what if it's Covid?"  And I immediately think of all the ways that would ruin my kids' lives - school, new jobs, sports, etc.  I will ruin the rest of my son's summer plans!  I will ruin my daughter's new job!  I will ruin her chances of going to YWAM, if that's what she decides to do.  I won't be able to go to work!  What about my co-workers?  What about my church family?  It will be all my fault!!! Who will take care of Rob? He can't even figure out if he has taken a nap or not.  How can I have a caregiver come in the home if we are quarantined?  I've ruined everything and it's all my fault!  And the more I start this uncontrollable thinking the greater my anxiety and the tighter my chest and the greater the fear and the more unreasonable thoughts swirl and the greater my fear and a giant downward spiral...taking me down the royal flush.

See - complete poppycock.  Absolutely ridiculous train of thought.  But the panic started first - while I was still sleeping.  The panic and anxiety are first, for no reason, and as I try to figure out what is going on, the result is completely irrational thoughts.  I try laying in bed as still as possible so Rob doesn't know I'm awake, hoping I can pray my way out of this.  I just need a minute to calm my thoughts, to focus on the Lord, to call on His name to rescue me.  Before I can focus, I barely wiggle and Rob yells "Did I sleep at all?" "Did I sleep okay?" "Is it shower time?" 

I can't answer.  I just grunt, roll out of bed, stumble to the bathroom and shut the door.  I am not even all the way awake yet.  My brain is not on.  I have nervous stomach issues.  I lay on the lovely cool tile floor and pray.  Nope - after 20 minutes, I can't shake it, and lay my head on the strangely comfortingly cool porcelain seat. The only way to recover is to purge the fear.  I'm exhausted.  But, I have people relying on me.  So I drag myself off the floor, and start my routine.  I'm wiped out and the day has not begun.  I long to crawl back in bed, pull the covers over my head, and hide from the world.  But...not today!  not ever, any day...no time for that.  

I start the morning routine and get Rob up and out of bed for his shower.  He starts with the same exact conversation as always.  
       Did I sleep okay? Yes, you got 11 hours of sleep. 
       How did you sleep? Not good. 
       I have Huntington's. I know you do.
       So, you didn't sleep okay? Nope
       Do I have Meals on Wheels today? Yes, it's Friday.
       I like Meals on Wheels. I know you do.
       Did you sleep okay?  Nope.
       I don't think I slept good, did I?  Yes, you got 11 hours of sleep.
       I have Huntington's.  Yes, you do.
       Did you sleep okay?  Nope.
       I like Meals on Wheels.  Yup, I know.
       Crystal has short hair. That's great.
       I'm retired.  Yes you are.
       I have Huntingtons. Yup.
       Did you sleep okay?  No, I didn't.
       I'm a no napper. You just woke up, it isn't nap time yet.
       I guess God just wants me to be retired. Big Sigh....

This is how our conversations go...all. day. long. every. single day.  (even when I try hard to get him out of his brain fog and present in a conversation)

At some point, I start crying, and just can't stop.
Rob says, "Sounds like you're crying....long pause...I'm sorry you didn't sleep well...I have Huntington's"
Sigh.

I tell Rob I've having anxiety issues and how mad I am about it, because none of the things I am worried about are even worth worrying about. I'm trying to get him a caregiver.  I sent in the paperwork to my long term care insurance.  The kids are fine. They are off doing their own things.  But I am also mad, because I am taking a day off work to spend with my girlie and I'm going to ruin it because I am having anxiety and I'm wiped out and emotional and we won't be able to have a fun day.  So - why not worry and panic about that, too, huh?  Ridiculous!!! We can't predict what this fall will look like for school or my job or anything until we are in the middle of it.  God is in control.  I'm trying to express my fears and failures and frustrations.  
And after I pour out all my ridiculous concerns to him, Rob says, "So...I have Meals on Wheels today?" All I can do is laugh and cry.  It's just so pathetic.  I feel so bad for him.  He can't pay attention.  So, I get myself under control and out of the shower and get him ready for the day.  

I am so frustrated with myself.
There is absolutely no reason to panic.
I mean, do I trust God or not?!  Of course I do!
100%!
So what is wrong with me?!

We aren't supposed to have a spirit of fear, but a spirit of POWER
We are commanded to DO NOT WORRY, but in everything, PRAY.

I KNOW, Absolutely KNOW these are TRUTH:

“So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand.” ~ Isaiah 41:10

“For God has not given us a spirit of fear, but of power and of love and of a sound mind.” ~ 2 Timothy 1:7

 “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” ~ Philippians 4:6-7

“When I am afraid, I put my trust in you."  ~ Psalm 56:3

“Peace is what I leave with you; it is my own peace that I give you. I do not give it as the world does. Do not be worried and upset; do not be afraid.” ~ John 14:27

“Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.” ~ Joshua 1:9

“Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.” ~ Psalm 23:4

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” ~ Matthew 6:34

“There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love.” ~ 1 John 4:18

“When anxiety was great within me, your consolation brought joy to my soul.” ~ Psalm 94:19

“But now, this is what the Lord says…Fear not, for I have redeemed you; I have summoned you by name; you are mine.” ~ Isaiah 43:1

“An anxious heart weighs a man down, but a kind word cheers him up.” ~ Proverbs 12:25

 “Humble yourselves, then, under God’s mighty hand, so that he will lift you up in his own good time.  Leave all your worries with him, because he cares for you.” ~ 1 Peter 5:6-7

“Tell everyone who is discouraged, Be strong and don’t be afraid! God is coming to your rescue…” ~ Isaiah 35:4

“Do not worry about your life, what you will eat; or about your body, what you will wear.  Life is more than food, and the body more than clothes.  Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds!  Who of you by worrying can add a single hour to his life?  Since you cannot do this very little thing, why do you worry about the rest?” ~ Luke 12:22-26

“The Lord is my light and my salvation—whom shall I fear?  The Lord is the stronghold of my life—of whom shall I be afraid?” ~ Psalm 27:1

“Cast your cares on the Lord and he will sustain you; he will never let the righteous fall.” ~ Psalm 55:22

“Immediately he spoke to them and said, 'Take courage! It is I. Don’t be afraid.'” ~ Mark 6:50

“Be strong and courageous.  Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.” ~ Deuteronomy 31:6

“'For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.  Do not be afraid, for I myself will help you,' declares the Lord, your Redeemer, the Holy One of Israel.” ~ Isaiah 41:13-14

 “God is our refuge and strength, an ever-present help in trouble.” ~ Psalm 46:1

“The Lord is with me; I will not be afraid.  What can man do to me?  The Lord is with me; he is my helper.” ~ Psalm 118:6-7

“Fear of man will prove to be a snare, but whoever trusts in the Lord is kept safe.” ~ Proverbs 29:25

“He got up, rebuked the wind and said to the waves, “Quiet! Be still!” Then the wind died down and it was completely calm.  He said to his disciples, “Why are you so afraid? Do you still have no faith?” ~ Mark 4:39-40

“The angel of the Lord encamps around those who fear him, and he delivers them.” Psalm 34:7

“But even if you suffer for doing what is right, God will reward you for it. So don’t worry or be afraid of their threats.” ~ 1 Peter 3:14

“I prayed to the Lord, and he answered me.  He freed me from all my fears.” ~ Psalm 34:4

“Do not be afraid of them; the Lord your God himself will fight for you.” ~ Deuteronomy 3:22

“Then he placed his right hand on me and said: 'Do not be afraid. I am the First and the Last.'” ~ Revelation 1:17

“Jesus told him, ‘Don’t be afraid; just believe.’” ~ Mark 5:36

“And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love.” ~ Romans 8:38-39

“The Lord your God is in your midst, A victorious warrior. He will exult over you with joy, He will be quiet in His love, He will rejoice over you with shouts of joy.” ~ Zephaniah 3:17

"He who dwells in the shelter of the Most High will rest in the shadow of the Almighty.  I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”…He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.  You will not fear the terror of night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday.  A thousand may fall at your side, ten thousand at your right hand, but it will not come near you…For he will command his angels concerning you, to guard you in all your ways…“Because he loves me,” says the Lord, “I will rescue him; I will protect him, for he acknowledges my name.  He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him…” from Psalm 91:1-16

I know these are true.  So why do I fear?  Why do I panic? Why am I anxious?  

The best way for me to battle the panic and anxiety, is to PRAY, PRAY, PRAY, and go Be Still.  To get away.  I have to escape the noise and distractions and chaos - find some respite...and be still.  Then I can hear that clear, calm, quietness of the Lord, reassuring me that He is here, He is leading and guiding us through this journey, He began a good work in me and will be faithful to complete it, He will not leave me nor forsake me. He is my comforter, my all in all, the Holy one, my Father God.  I am wrapped in His arms of comfort and love and power and strength and absolute peace.

I cling to these truths and His presence and His peace wash over me and cleanse my soul from all fear.

And I had a LOVELY day.  I dropped my son off to go on a family vacation with another family.  I CRY with gratitude.  The Lord has blessed us tremendously with such amazing friend who have all adopted him in as one of their own. He is my latchkey kid - always finding a house to crash at and a home to be at when he needs to - and they feed him because he is there - and they love on him - and they take him camping - and they take him dirt biking - and they have shuttled him here and there (before he got his license) - and they have all adopted him.  We are SO blessed.  

So, I dropped him off to go on his family vacation with a different family.  Came home, loaded up and got ready to head out the door.  When I told Rob I was leaving he told me, "have fun, that's the whole reason you're going, right?"  WHAT?  I stopped in my tracks.  My jaw on the floor. 

On a typical morning, Rob will ask me at least 20 times, as I am getting ready to go to work, "are you going to work today?"  But today...How did he remember? What is this moment of clarity?  I cried happy sentimental tears with a broken heart.  There's that guy.  There's my Rob.  The one who cares.  And I heard my Father in Heaven in that phrase.  Go, my child, and Be Still, stop worrying, do not fret, do not fear!

So...my girl and I took kayaks to a lake and smiled, and laughed, and had a chance to be still.  It was blissful and far too short.

And the evening was VERY busy.  And Rob asked me the same questions repeatedly when I got home.  And we had the same conversations we have all day every day.  Yes, dear, you have Huntington's, you are retired, you had Meals on Wheels and you didn't get a good nap. But I wasn't fearful or frightened or frustrated....  

Be assured, He is with you in whatever you face, in the turmoil and struggles, amidst the anxious thoughts and the worries of life. He is there, strengthening, helping, and He holds you in His hands.

God is greater. He gives us the power to live courageously, boldly, fearlessly in this life, when many things that surround us would tell us to be afraid. His truth whispers strong and sure - “Do not fear.”

All of that stuff on your mind? Give it to Him – again. Replace those fearful thoughts with His words of truth. And sleep in peace tonight. He knows what concerns you, He’s got you covered.

 

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.