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Monthly Archives: April 2020

Long Way Home

When I was 15, I spent 8 or so of my Saturdays, attending Driver’s Ed. I would come each weekend, dressed in my fringed leather jacket, looking like the punk I thought I was, counting the days till I could drive. To be able to come and go as I pleased, go wherever I wanted, and the freedom to do whatever I wanted to do without my parents being involved! I couldn’t wait!!

When I sat in the driver’s seat for the first time, I was terrified! (Full disclosure: I had once driven about 50 feet with my friend, Barb, but I scared us both, so that was the only time I’d driven before that day.) Thanks to my excellent teacher, Mr. Radar, I got through driver’s ed and got my license. I got my first car – a powder blue Volkswagen Rabbit – and I was FREE!!!!

For most of us, driving is equated with independence. We long for the open road, plan road trips, write and sing songs about driving – driving away, driving home, driving just to drive. As much as we curse the morning commute, the very fact that we have traffic jams attests to how much we covet our cars and being able to drive them. For most of us, the ability to drive, is part of who we are. We are so used to just walking out of the house, jumping in the car, and going wherever we want. It’s easy to take it for granted.

So, what happens when someone tells an FTD patient that they can’t drive anymore?

Now, just because someone has FTD, it doesn’t automatically mean they can’t drive. Unfortunately, though, many people with FTD lose their ability to plan and multitask, or they may have slower reaction times. Couple that with a loss of inhibition and difficulty regulating emotion, putting them behind the wheel of a car could be a recipe for disaster.

Remember, too, that most people with FTD have little to no understanding of their condition. In their mind, they are fine, nothing is wrong, and – quite often – everyone is against them. The loss of their driving privileges is just another blow.

For Keith, this blow came last year. After undergoing neuropsychological testing, he was strongly advised not to drive. A driving evaluation done several months later was the nail in the coffin. Until this past week, we hadn’t seen the results of the evaluation. Having been told at the time that he did, “fine,” Keith was convinced that the doctors and I were conspiring to keep him “locked up.” (Have I mentioned paranoia and suspicion as a symptom?) As this sentiment brewed and stewed these past months, it increased Keith’s agitation whenever it came up. He was certain that a trip to Mayo Clinic for a second opinion in February, was the answer and looked forward to it with anticipation. He was convinced that he would leave Mayo with the diagnosis changed and his driving privileges restored. When this didn’t happen, it was a second low, hard blow.

Recently, he requested the results of his driving evaluation. After being momentarily convinced that they had been “lost,” by the hospital, they came in the mail this week. Watching him read the analysis was sad. Reading them myself was sobering. While he did well initially, when speed and distractions increased, he was unable to keep up. His performance was poor enough that he was not allowed to complete the Interstate portion of the evaluation and the tester officially recommended the revocation of his license. The third blow.

After the initial dejection, there was anger and accusations. Because I had answered some questions for the evaluator, I had influenced her and this was all my fault. Anyone could have make those mistakes. There are people out there driving right now that shouldn’t be driving. He could drive better than anyone, especially the doctor!

By evening, things had settled down again and I haven’t heard any more. I’m sure I will eventually, but for now, all is quiet.

Keith has a local senior ride service that brings him home from work when I can’t, he could take the bus anywhere he likes for free with his disabled veteran card, and I take him anywhere he needs or wants to be. The reality is, however, he doesn’t generally go anywhere. And none of that is the same as being able to get in his car and go by himself.

As hard as it is for me to watch him be so down and miserable, I can’t even fathom how hard it must be for him. He feels betrayed by everyone and stripped of a fundamental part of who he is. Keith was one of the best drivers I knew. He loved driving! He liked nothing more than getting in a truck full of boxes and accepting the challenge of finding a route across the delivery area. He thought nothing of driving 45-50 hours a week, through rain, blizzards, you name it – whatever the weather threw at him, he didn’t stop and he always made it home.

Now, his pride and joy, Packer green Taurus sits in the driveway. Keith won’t ever drive it again. Keith won’t ever drive anything again. I can’t blame him for being mad. I don’t know that I’d handle it any better. It’s just another one of the casualties of this war.

This war . . . This is dementia.


*Along with being a song about driving aimlessly on “the long way home,” the title is a nod to Supertramp and Keith’s enduring love of classic rock.

 
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Posted by on April 26, 2020 in Uncategorized

 

It’s a Minefield Out There

I would like to spend some time talking about some of the coping mechanisms many care givers use to make life a little easier. A support group I belong to fondly calls them the “Four D’s” – Delay, Distract, Deflect, and loving Deception. Between demanding behaviors (they want what they want and they want it NOW), impulsivity, and a loss of logic, FTD can create a real minefield for caregivers. When our loved one wants something they can’t have, or something that is just impossible at the moment (no, we can’t get chocolate mochas from the coffee place every night), we have to tred carefully, trying not to set them off. Add in some other common FTD symptoms – anger, suspicion, loss of inhibition, swearing – and you can end up with a full blown explosion. Luckily, there are a few tricks we can learn to diffuse many difficult situations. It’s not going to be perfect, and the loved one might still get upset, but if you can keep them from being upset with YOU, or even just less upset than they would have been, we’re going to call it a win. It takes practice, and can feel unnatural, but these tricks often work really well.

Delay – The trick here is to delay the request with some sort of stall tactic. At one point my husband wanted to order some fancy (read: expensive) vitamin supplements guaranteed to increase energy, improve memory, boost virility – you know, basically a $100/bottle cure-all. I could have argued, tried to tell him that it wouldn’t do anything and would be a waste of money, but it would have just been a big fight and I would have been the “bad guy” who wanted to keep him sick and didn’t want him to feel better. So instead, I took a moment to staple my lips, and then said, “We should probably run the ingredients past the doctor to make sure there’s nothing that interacts with your medications.” Now, he was still mad, but not near as mad as he would have been if I started an argument. Sometimes a delay will lead to the loved one forgetting about the request. In our case, that doesn’t usually happen because Keith’s memory is still pretty good, but it still works to put off giving an answer until later.

Distract – This one is pretty much what it sounds like. When something comes up that you know is going to cause an argument, give as brief an answer as possible, and change the subject. Occasionally I need to talk to Keith’s doctors about his care. Maybe I’m seeing a new behavior I want to talk to them about, or I’m sensing that a medication adjustment is needed. I try to be discreet and call when he’s not around, but sometimes they return a call when it’s not the most convenient and I have to find a place to talk. Invariably, this leads to a question about who I was talking to. My general response is something like, “Oh, just a friend I haven’t talked to in a while,” and then quickly shift gears, “Would you like some lunch?”, or, “What movie were you watching?” This, hopefully, will get their brain to switch tracks.

Deflect – Deflection is all about getting the blame off you, the caregiver, and putting it on someone else. I use this one A LOT. “The doctor says she wants you to do this test.” “The doctors say that increasing your dose of this med will help you sleep better.” “I don’t know why the doctors say you can’t drive, honey. I’m really sorry.” In my experience, the doctors understand how hard our job is and are more than happy to let the patient be mad at them if it means making our lives a little easier.

I can hear what you’re thinking – But, you’re lying to them!!! Technically, yes, it’s a lie. This is one of the hardest things to get used to. This person has been your spouse, your parent, your child, and honesty is always the first rule in relationships. It goes against every fiber of our being to lie to them. This is where our fourth “D” comes in – Loving Deception.

Another name I’ve heard for Loving Deception is Therapeutic Lying. It involves creating a story or telling a fib in order to do things your loved one needs, keep them safe, or even just keep them calm.

Let’s look at the example I gave about secretly calling the doctor. Keith, like many FTD patients, has no recognition of his symptoms. He has no idea that anything is wrong and feels that he is exactly the same as he has always been. Because FTD has virtually destroyed his ability to reason, use logic, and make good judgments, it does no good to explain or try to convince him because that part of his brain simply does not function correctly anymore. This makes it my responsibility to take the actions needed to keep him safe and as happy as possible. If I start seeing an increase in irritability, anger, or unsafe behavior, I owe it to him to call his doctor and let them know. I do it secretly because, if I call him on his behavior or tell him I’m talking to the doctor, he will become suspicious and accuse me of wanting him to be sick, of causing his anger issues, of making things up, etc., etc., etc. There is no purpose in it and its actually harmful because then he’s upset besides. The goal is always to make sure the person gets the care they need, stays safe, and keep the peace as much as possible. Sometimes you have to tell a few fibs to get there.


Before I go, I have to give a shout out to the wonderful people at my online support group, The FTD Support Forum. The folks there have been lifesavers to me. When I first started learning about FTD – long before Keith was diagnosed – I stumbled onto their site, and they welcomed me with open arms. They’ve taught me so much (including The Four D’s), walked with me through some really difficult times, and laughed with me in those moments when it was a choice between laugh or cry, and I chose to laugh. To all of those who have walked ahead of me, but come back to keep walking beside me, thank you.

Till next time . . . this is dementia.

 
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Posted by on April 18, 2020 in Uncategorized

 

Curve Balls

It’s been about 3 weeks since we got our new beds.  Things have been going fine.  I think we’re both sleeping better, the animals love having even more places to sleep during the day, and when I go to bed at night, and I look at him sleeping there, with his sheets and blankets twisted into a hopeless mess, I’m glad I don’t have to contend with that anymore.

In one of my previous posts, I mentioned that almost nothing on this FTD journey has been what I expected it to be.  All the ideas my brain generated, all the scenarios I created about Keith’s progression, almost nothing has ended up the way I envisioned.   I imagined increased problems with communication, loss of skills, memory loss, and while Keith experiences these things, it’s been a very slow progression and he remains pretty functional in a lot of areas.  What I really didn’t expect, was the development of new skills and interests that he’d never shown before.

When people think of dementia, they generally think only of losses.  One thing after another, lives are stripped of all they once were.  Once in a while though, a dementia patient will develop new skills that they never had before.  I’ve heard of people taking up painting, pottery, or playing music or singing, in the years after their diagnosis, even when they little to no interest in it earlier.  Apparently, the changes that take place in the brain, particularly with FTD, can increase activity in other places, at least temporarily.  In our case, this seems to have manifested itself in a most fascinating way.

I have known Keith for over 30 years, and lived under the same roof with him for most of that time.  He has never, in all those years, made the bed.  When I met him, he didn’t even use a top sheet! Whatever kind of a mess he’d made with the sheet and blankets the night before, he would just get up and walk away.  In recent years, if I didn’t get to it right away, he would bark at me that it needed fixing, but would never fix it himself unless he had to.

Now, suddenly, since we got these new beds, Keith gets up in the morning, and makes the bed!!  And when I say, he makes the bed, he MAKES the bed.  He straightens and pulls, he moves the bed away from the wall and makes sure the sheet is even on both sides.  The blanket is laid flat and also made even before he tucks it all in at the bottom.  Then comes the comforter, put on neatly and folded back at the top, and finally, the pillows are fluffed and stacked.  Every morning, I watch in amazement as he performs his morning ritual – for ritual it seems to be.  It is all done with an almost obsessive quality that demands it’s completion in a manner that is, “just so.”  All so very unlike anything he has ever done in the entire time I’ve known him.

In hindsight, there was a precursor to this new domestic expertise.  I had never known Keith to read books.  He was always pretty open about not liking to read and finding it difficult as a boy.  Imagine my surprise when, about ten years ago, he discovered a love for western novels!  It wasn’t great literature or anything, but he was reading books!  For many years after that, he always had a book.  When he finished the one author he liked, he found another, and read most of the books that man wrote too.  He would bring his current book to appointments, read before bed, read in the bathroom.  I never would have thought it could happen!  But, I reasoned, for a lot of people, they just have to find the right book, and then they’re off and running.  Now though, I wonder, was this a very early symptom of brain changes?  We never could have used it to predict anything that came later, of course, but when you put on that 20/20 vision looking back . . . you have to wonder.

In the last year or two, Keith’s reading has dropped off quite a bit.  He will still make a show of it sometimes, and usually has a few books on the table next to his bed, but I haven’t seen him actually reading in many months.   Funny, isn’t it – the disease giveth, and the disease taketh away.

We have a very common saying in FTD Land – you meet one person with FTD, you have met ONE person with FTD.  They are all as unique in symptom, presentation, and progression as the individual person.  This journey is a monumental lesson in taking each day as it comes – no expectations, no assumptions, no real scaffolding or standard timeline to guide us.  Just one slow day at a time that occasionally throws you a curve ball you never saw coming.  Sometimes, if you’re really lucky, it’s a curve ball that you can actually enjoy while it lasts – like a neatly made bed.

Wishing you all a very happy and blessed Easter.  Till next time, this is dementia.

 
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Posted by on April 10, 2020 in Uncategorized