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Monthly Archives: March 2020

Virus Edition

Well, it’s been quite a week.  Trying to find a new routine, a new normal, while navigating our way through uncharted territory.  I’m not going to lie.  It’s been kind of rough.  We seem to be settling now, but certain events of the week are unresolved so there’s some looming uncertainty.  I’m hopeful it will pass but if there’s one thing you can count on around here, it’s that you never know what might happen next!

When Keith was diagnosed last January, I decided to send our youngest two kids to school.  I’d been homeschooling for many years but things hadn’t been going well for a while.  Among other issues related to the kids’ personalities, Keith’s increasingly short temper made it very hard for the kids to be kids.    So, it is with great irony that we are now homeschooling again.  It’s a lot different now though since I don’t have to make up the curriculum and am not working.   We’ve only done one week so far, but the kids have actually been doing really well and have been good about working through their assignments.

Having us all home all day though – the kids from school and me from my job driving school bus – has been hard on Keith.  He isn’t used to having people (and noise!) in the house all day.   The routine has been disrupted, and that is very difficult for him.  It’s very difficult for us too . . . .

At the worst moments of the week, Keith was very agitated and that creates a lot of chaos for the whole house.  Whenever he came out of the office, he was ranting, slamming doors from one end of the house to the other, and just being unpleasant.

When FTD erodes a brain, the affected individual generally sees things only through their own perspective.  They may become suspicious, almost paranoid, that everyone is against them.  And small wonder!  In their mind, they are the same as always.  All of their rights are being taken away, and they can’t understand why.  They aren’t in denial – that part of the brain just isn’t working right anymore.  No amount of reasoning, explaining, or logic will help them see it better or understand.  It would be like trying to convince you that the sky is green.  You know it isn’t green, it’s never been green, and it never will be green.  For them, they’re fine, they’ve always been fine, and they always will be fine.   We all know the acronym of “FINE,” right?  Say it with me, “F****d up, Insecure, Neurotic, and Egotistical.”  That’s FTD in one big nutshell.  (I’ve heard the “E” stand for “emotional” too, but Egotistical fits better in FTD Land.)

The last two days have been better, thank goodness . . . hang on while I find some wood to knock on . . . . So we muddle through.  Like many states, we’re on “stay home” orders, which only means so much when you have three adult kids who work in the state across the river and are “essential personnel” (manufacturing, a car wash supervisor, and grocery store florist), and Keith, himself, who works as a dishwasher two days a week in the local hospital.  I have some concerns about one of them bringing the virus home, but am glad that they are able to continue working.  It’s such a mixed set of feelings.

Keith, who usually watches the news constantly, was completely unaware of the stay home orders until I mentioned it the day it was going into effect.  He has said relatively little about the entire pandemic, but when he does, it’s usually to blame political parties, throw around some racial slurs, and/or just express annoyance with everyone’s stupidity.  I have to admit, his comments are often pretty funny – even if they’re awful and we know we shouldn’t laugh.  Keith always had an incredibly quick wit and wicked sense of humor, so it’s nice that some of it has been retained.  Unfortunately, it’s often much more cutting than it used to be, and frequently very off-color.  So, we stifle guilty laughter behind our closed hands, not daring to make eye contact with each other.

So, if you’re getting to spend extra time in your house, try to enjoy it.  Play some games, work on some projects, do things you’ve been wanting to do but haven’t had time for.  I’ve been teaching our youngest one some embroidery that she’s been pestering me about, and I was able to finish crocheting a blanket I started a year ago.  It is my dearest hope that all of my friends and family stay healthy and safe.

Until next time . . . . . this is dementia.

 

 
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Posted by on March 29, 2020 in Uncategorized

 

A Tale of Two Beds

I started this post before all heck broke loose and our lives turned upside down (thank you Coronavirus).    Not sure if it seems as important as it did at the time, but I thought I would keep it anyway because it was an important topic to cover.   Besides, we’ve all probably had enough virus talk to last a lifetime, and there will probably be plenty of it still coming.  So, here we go . . ..


We have separate beds.  You know, Rob and Laura Petrie style, except we have two full beds in opposite corners of the room.  I know, I know . . . lots of people do it.  When one spouse has surgery, or someone snores too much.  It shouldn’t be a big deal right?

Except it is.

It’s another reminder that things have changed, another loss.   Even though our relationship has changed over the years, it feels very final.

Neither one of us had been sleeping well for a while.  We had a king sized bed, but the dog likes to sleep next to me, and there’s usually a cat or two joining the party.  They also like to come and go throughout the night, always using us as their stepping stones.  Keith has trouble sleeping well in general, but add the animals, and then, there had to be a certain amount of space between us.  Not to get to personal, but once, during the night, he thought he was petting a cat, but when he realized it was me he was touching, I was afraid he sprained his arm he jerked it away so fast!   In addition, he was often restless when he was sleeping, causing the sheets and blankets to be everywhere.  The bed just wasn’t working.

So one day, I gingerly raised the question, “Do you think you would sleep better if we had separate beds?”  (I measured first to make sure it was even possible.)  I honestly never thought he would go for it.  I thought he would view it as a betrayal, or some sort of crazy idea that I was cheating on him.  Imagine my surprise when I got an emphatic, “Well, YEAH!”

So, the plan was put in motion.  I ended up with influenza the following weekend so things were delayed slightly, but it was clear he wasn’t giving up the idea when he asked me several times if I’d gotten around to measuring the room.

Finally, I found some beautiful wood beds on Craigslist.  I was actually excited for them.  They’re both old, at least 100 yrs according to their previous owners.  Anyone who knows me, knows I’m a sucker for all things old and I knew these would fit in great with our house.

But then came moving day.  Taking the old bed out, cleaning the room, moving the dressers . . . . maybe don’t ask my kids about my crabbiness level.  It was emotional.  But we got it done.  The boys were a big help.  Keith was almost giddy.  He tried to help, God bless him, but was more in the way than anything else.

So, now we have two beds.  It’s been a little over a week and I’m sleeping better than I did the first few nights.  It’s been an adjustment, but it was needed, and it was right thing to do and at the right time.  One of the key things on this dementia journey seems to be learning to take things as they come.  No expectations, no preconceived notions.  Just take each day as it comes and try to roll with it.  So much of it isn’t what you read about in books, but . . . this is dementia.

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Posted by on March 19, 2020 in Uncategorized

 

Welcome to FTD Land

Our journey to an FTD diagnosis lasted almost five years.  For most of that time I was actively searching for what had happened to my husband, Keith.  Over those five years he had become angry, suddenly forgetful, and occasionally confused about things he never would have been before.  He was a different person than the man I married.

I scoured the internet for any information I could find.  Keith had been an alcoholic so I thought maybe he had damaged his brain.  But that didn’t fit either.  He was sober now, and the brain should start to heal.  Instead, as time went on, he got worse.

One day I found something called Frontaltemporal Dementia (FTD), and started reading.  I felt like someone had been hiding in our house and taking notes.  Everything matched up.  The symptoms they were describing sounded like what our lives had become the last several years.  I felt like I was finally getting somewhere.  Even if it wasn’t FTD, at least I knew that others were experiencing the same things.  I wasn’t alone.

Unfortunately, a lot of doctors don’t know much about FTD, and don’t know what to look for.  The Alzheimer Association has done a wonderful job raising awareness about Alzheimer’s Disease, but most people don’t realize that AD is only one form of dementia.  They think that dementia only has to do with memory and don’t realize that it can also mean apathy, anger, loss of reasoning, behavior and personality changes, and so much more.  So, when we went to the doctor and I told them something was wrong, they would ask Keith things like, “Who’s the president?” , “What year is it?”, and – my favorite –  “Spell ‘world’ backward.”  It was insulting.  We were told he had depression, that we had relationship problems, that we needed marriage counseling.

Finally, after a lot of frustration, tears, demands, and, finally, threats, we saw some new doctors, had more tests, and in January of 2019, Keith was officially diagnosed with FTD.   In some ways, this made things easier – for me, anyway.  I finally had a name to put to his condition.  I felt validated.  It wasn’t just me, I wasn’t just imagining it, there really was something very wrong.  But for Keith, the nightmare was just beginning.

One of the most common symptoms of FTD is a lack of awareness.  Anosognosia, it’s called.  In Keith’s mind, he was fine – no different than he had ever been.  He couldn’t see any of his strange behaviors, saw nothing wrong with his angry outbursts, and didn’t know how his actions affected those around him, even our children.  All of a sudden he was being told he had a rare dementia with no treatment and an average 7 year life expectancy, was recommended that he cut back on his work hours to reduce stress, file for disability, and – the lowest blow – told not to drive.  In one fell swoop, everything he knew as his life was taken away.  I could see the errors in judgement, had watched him make some serious driving mistakes, had read the test results and knew what they were all pointing to, but for him, it was all for nothing.  His life was being destroyed – for nothing.

Keith is being managed by a good team now.  He is on medications to stabilize his moods, which seem to work for a while before requiring periodic increases.  There are good days . . . and some not so good days.  He’s had a slow progression and will likely continue that way.  At age 61, he could live for many years yet, or he could suddenly decline.  One of the hardest things about FTD is that there is no set pattern, no road map.  Every patient is different and their progression is as unique as the individual.  The one thing I can say with certainty is that, as we have gone on, nothing is the way I thought it would be.  When I first read about FTD, my brain created scenarios.  I thought through all the possible outcomes I could think of – what symptoms would develop next, what the progression would look like, how I would react to things – and in almost every case, things went in a completely different direction than what I had imagined.  In writing here, I am hoping to share our story, to let you peek into our lives and see what dementia is – not just what you read in pamphlets or on websites – but what it really is – the day to day, the in and out, the good, the bad, and the ugly.

I’m going to be honest and say straight up that I don’t know if I’m going to be any good at keeping up with blog posts.  Who knows?  This might be the only one I ever write!  Ha!  But,  if I can help bring awareness about FTD and help other families with their journey, I want to try.   So, till next time . . . This is Dementia.

 

 
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Posted by on March 12, 2020 in Uncategorized