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A is for Advocate

We had some excitement the last couple days.  Keith had been told to go to Urgent Care whenever it was convenient, so he could have a back x-ray.  He’s been having terrible pain in his back for many months now, but hasn’t been able to see his primary care doctor (it’s actually more that his primary care doctor had left and hadn’t been replaced yet, but that’s another story).  He’d had appointments with doctors on tele-health, but it’s hardly the same thing.

I think he finally has a doctor now (I’m knocking on wood as I type), and she seems to be a little more proactive about getting to the bottom of what’s going on with his back., including leaving orders for this x-ray.   So, on Saturday, I took him in.  Naturally, I couldn’t go back with him (thank you Covid), but I didn’t think it would be a big deal.  It was just an x-ray.  Keith was going to ride his bicycle home, but I waited a while in the lobby just in case.  It was a good half hour before the nurse came out to let me know what was going on.  He had seen a doctor, who gave him an IV and some anti-inflammatory medication.  I was surprised but thought, well, ok . . . weird, but no biggie.  It was going to be another hour before the IV was done, and I had flowers waiting at home to plant, so I left.

When Keith got home, he said something about a prescription the doctor gave him.  Oh?  What did he give you?  Prednisone and Vicodin (aka hydrocodone).   While all the red flags in my head started waving and alarm bells went off all over, I mustered the calm to ask how much Vicodin he gave him and how he’s supposed to take it.  He wasn’t able to give a clear answer – something about 6 days worth, half a pill a day,  the doctor told him 3 pills, but there were 6 in the bottle . . . it was clear he didn’t remember/understand what the doctor told him.  Meanwhile, my brain is screaming – Did the doctor even look at his chart??  Who thinks it’s a good idea to give a dementia patient who has a history of alcoholism, who has it in his chart that he gets 2 beers a night – Vicodin!?!?!?

I looked over the discharge papers and the meds they gave him – it was 6 pills, and the bottle said to take one every 12 hrs.  I asked if the doctor mentioned anything about not drinking alcohol with this medication and he said no.  I told him that if he takes it, he can’t have his beer.  No problem – he’s not going to start the Vicodin till the next day when he has to work.  So . . . then, you’re not going to drink beer tomorrow?  No … maybe – can’t I just take the pill in the morning and not take the one at night?

. . .. . Can you see where this is going?  Only in FTD Land do I get to be both the Policeman AND the Bad Guy.

I called the doctor.    I told him about my concerns and that he put me in a very difficult position.  To his credit, he owned up to the fact that he missed the dementia diagnosis on his chart and suggested that I hang onto the pills.  He had been reluctant to give them in the first place and only wanted Keith to take them when the pain was unbearable.   I asked if he realized that Keith was going to get angry with me if I try to take the pills.  He started to suggest several other approaches I could take but I stopped him.  How about this, I said – you can tell him.  I handed Keith the phone telling him that the doctor had called back and, having had a chance to look at his chart better, wanted to clarify a few things about his meds. (Remember the 4 D’s and Loving Deception?  Pretty good, huh?)

Keith was agreeable and polite with the doctor, but was NOT happy about me taking the pills.  I have them, but that doesn’t mean it has gone well.  There has been a lot of very hard feelings about being treated like a baby, I don’t trust him, I get off on emotionally abusing him, etc., etc., etc. . . ..

Ok, so, why am I telling you this?  I want to impress on you how important it is to advocate for your loved one.  It is an absolute must and you can’t allow yourself to be bullied or intimidated out of your responsibility.   I let my guard down.  I made assumptions.  I let my desire to go home and enjoy the rest of my Saturday afternoon take precedence over my duty to Keith.  And I paid for it.  Do not get me wrong – I am not beating myself up or running myself down, but I’m owning my mistake and I am using it to strengthen me for the next time.  I will not leave him alone at the hospital or doctor again.  Not ever.  I don’t care what disease or pandemic or other issue may be happening – he and I are a package deal and if they don’t want me there, they will have to bodily carry me out.  And I’ll be on the phone with 911 and reporting them while they do it.

If you think I sound like I’m being over dramatic, consider the “could have’s” here.

  • He could have not told me that he got that prescription.
  • He could have taken the Vicodin/hydrocodone and then drank beer.
  • He could have taken the Vicodin and then snuck upstairs while we were outside or not paying attention and got into harder alcohol that our daughter hides in her closet (which she needs to hide because he has been known to go looking for it).
  • He could have taken a half pill, decided it wasn’t working (or not working fast enough) and taken more – lots more.  I know this because he has done this before with other medications.
  • Bottom line – he could have died.

Hydrocodone and alcohol is a dangerous mix.  He could have very easily overdosed and I would have had no idea what happened.

So, the take home today, folks – advocate.  When your loved one – regardless of their condition – can no longer process doctors’ instructions, does not have the ability to reason and use logic, doesn’t understand the consequences of their actions – you can’t assume that the doctor has read their chart or understands their condition.    You have to be their voice.  They may not like it.  They may get mad.  But the reality is, you are all they have.  Their ability to make decisions and know what is best for themselves has been compromised and they need us to do it for them to the best of our ability. **

This, folks, this is dementia.


**PS.  I feel compelled to add – do not put yourself in danger.  If your loved one is explosively angry or you risk some sort of physical harm – don’t get in the middle.  Make sure you are safe and then, if you are able, do what you can.  If you can’t call the doctor in front of him, call from your car or a friend’s house, or hand carry or mail a note.  If you are at the hospital or clinic with him, say you need to step out to use the bathroom and speak to the doctor or nurse in the hallway.  Finally, if you are in danger with a suddenly out of control Loved One, DO NOT hesitate to call 911.  Explain that he is a dementia patient and is in a rage.  They are trained to handle these kinds of situations and they can help.

 
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Posted by on May 25, 2020 in Uncategorized

 

Going it Alone

Over the years of dealing with FTD and getting to know many caregivers, one of the hardest things to deal with seems to be loneliness.  For most of us, our kids are growing, or grown, up and these are supposed to be the years to reconnect with our spouse, go on vacations, be spontaneous.  This is not what any of us signed up for or could have anticipated in our wildest dreams.  Just on a day to day basis, the house gets mighty quiet at  night when he goes to bed at 8:30, and I’m still winding down from the day and/or waiting for adult kids to come home.

I think it’s the day to day stuff that is the hardest.  Many FTD patients become apathetic – that’s often a first sign, very often mistaken for depression – and they just don’t want to do anything, even things that are important to others, or that would have been important to them before.  Of course, it’s a double edged sword because, if you do get them to go, they might act in inappropriate ways, say things that are embarrassing, drink too much, etc., and you might just end up asking yourself why you were so insistent that they come.   But our memories play tricks on us.  We long for things to be the way they were, but then forget that the person who lives in our memories, isn’t here anymore.  More and more, we just find that it’s easier to go by ourselves, but then, there’s nothing easy about that either.

Over the course of this journey, I’ve lost count of everything I’ve done alone.  Weddings, funerals, reunions.  The things that hurt the most, of course, are the things for the kids – games and sports meets, First Communions, Father/Daughter/Son events, teacher conferences, doctor appointments . . . . I could go on and on.

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On the other hand though, when he does come, it really means a lot, even if he acts kind of out of place.  One particularly memorable event was a father/daughter pizza making contest for a group our youngest is in.  We really didn’t expect him to go, and we had a few guys in line for a back up plan, but he surprised us by saying, yes.  Well, not in so many words.  I think, what he said was, “I suppose she really wants me to go.”  But what’s important is that he went, and he had fun, and so did our daughter. He has surprised us on a number of occasions.  They don’t outweigh the times he hasn’t gone, but we’ll take what he’s able to give.  I remind the kids we need to just be thankful he came this time.  I know it still hurts, but I feel like they’ve handled it fairly well for the most part.  As the kids have gotten older, it stings to hear them talk about memories they have about their dad and that there aren’t very many good ones.   I wish I could change that for them.  In the end though, I know I did the best I could and now it’s up to them to decide how they want to deal with it.  My dearest hope is that they don’t let resentment eat themselves up and, instead, they eventually find their way to forgiveness.

I don’t think you ever get used to it exactly.  I’m not sure it even gets easier.  I think, like most things involving grief – for this is very much what it is, grieving a loss of what was – it comes in waves.  Some days you’re sailing along smoothly, confident in your new reality, ready to take on the world, and then all of a sudden you find yourself crying in the bathroom because someone came up to you at a party that you haven’t seen in years, asking about your spouse, and you get to watch “the look” come over their face – sadness, sorrow, pity – and then they go off to the dance floor.  You’re happy for them that they have each other, but also miserably sad for yourself because, even if he was there with you at the party, it wouldn’t be the same.  It sucks.  And it’s always when you least expect it.

So, we grieve, and move on.  We know we’ll grieve again.  And even if it isn’t full on grief, as we get ready to go out and face the next social event, there will always be that twinge of loneliness, of longing for what was and won’t ever be again.  Our grieving comes in stages and waves, always knowing that there is more to come.  It may look different over time, but it’s always with us.  This, too, is dementia.

 

 
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Posted by on May 9, 2020 in Uncategorized

 

To Pick, or Not to Pick – That is the question

Caregiving is a game of picking battles.  You have to decide what is important enough that you need to stand your ground, and what is worth letting go to maintain peace.   Even when something is important, many times you have to find work arounds (see my post on the Four D’s) to make your loved one see things as their idea or have enough incentive to agree.

I like to think that I’ve managed this particular “minefield” fairly well over the years, but it can be tough.  When I’m tired, stressed, or hormonal (don’t even get me started on that!), it can be really hard to keep the priorities straight and stay calm.  There have been many times when I have handled things poorly.  It’s those times when I have to remind myself that I’m only human and, no matter how much I know better,  I am simply not going to be able to respond the way I should every time.  It’s that old scene where the logical side of the brain is tapping me on the shoulder saying all the right things, but the emotional side is screaming about how mad, hurt, or lonely I am.

Some battles are easier to pick than others, and it’s a very individual decision.  What one person can let go, another person absolutely can not.  For example, I can live with Keith not showering (most of the time).  At least, I can live with it enough that I’m not going to pick a fight about it.  Could I stand at the door of our bedroom every morning with soap and a towel and demand that he shower before getting dressed every morning?  Sure.  Am I going to expend energy on that?  Nope.  But that’s just me.  For someone else, a daily shower is something that must happen.  This is especially true if incontinence is involved.  I haven’t decided what I’m going to do if/when that becomes part of our story.   I guess I just hope it won’t and, if it does, will figure it out then.

Food choice is another thing I can live with.   If Keith wants to eat bowls of cereal filled to the brim, go ahead.  If he wants a steady supply of chocolate – I can do that.  If I walk in the kitchen and see fork marks in the cake I made – no problem (I actually find that fairly amusing).  I try to keep an eye on his diet and offer him good things to eat, but I won’t fight him on it.  He generally always eats what I make for dinner so I count that as a win.  For other families, however, a loved one might want to eat constantly and they have to put locks on the refrigerator and pantry.  Or they might try to eat things that are harmful.  In situations like that, the family has to figure out how to put down limits, or stop them outright.

So, what battles do I pick?  Put simply – as few as possible.  I try to focus on safety and well being.  When we were still in the diagnostic stage, I insisted on the doctor appointments.  I always put the blame on the doctor – “Dr. B wants to run this test,” “Dr. C wants to rule out ‘x’.”   We needed to know what was going on for both Keith’s sake, and for the entire family’s sanity.

Driving has been a very thorny issue, and it is sometimes incredibly hard to stand firm on that, but I know I have to.  He’s had 3 different doctors say, very clearly, that he shouldn’t be driving, and I know myself that his judgement is impaired enough that he wouldn’t be safe on the road.  So, that is one I not only can’t give on, but if Keith ever tries to drive, will be forced to hide/take away keys, do something to make the car inoperable, or find some other means of preventing him from getting behind the wheel.

Recently, I’ve had a few times when I’ve let my emotions get the best of me.  I started to pick a battle that, in the end, wasn’t worth picking.  They were situations that really didn’t have long term consequences and were things that, in the short term, we could manage.  Luckily, Keith is to the point now that, though he gets really mad, curses, and yells, once it’s done, it’s done.  The last time it happened, as soon as I stopped talking about it, you would never have known it happened.  He was back to his usual self and nothing else was said.  Now, this also means that there’s no apologies.  He seems to have no concept of how angry he was, what awful words he said, or anything else, but that’s just another battle to either pick up or leave down.  What good what it do to insist on an apology when he has no understanding of how he was acting or how it could have affected me?   Even if he did apologize when I demanded it, would it be because he was sorry, or simply because I told him he needed to say it?

In the end, I know, because he’s sick, he doesn’t mean what he says.  His perceptions are skewed and his ability to empathize is gone.  What he says when he’s angry doesn’t hurt me because it’s not about me – or about him.  It’s just the sickness in his brain railing at the loss of control, the inability to do what he wants, and the way everything about his life feels unfair.  This is maybe the hardest battle to pick – choosing to not let ourselves take their anger personally.  It’s hard, but it’s necessary for our survival.  This is dementia.

 

 

 
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Posted by on May 3, 2020 in Uncategorized

 

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

 

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