Blue- I feel a lot like you are describing. I'm feeling like the outside world is so overwhelming- driving scares me sometimes and I don't know when I'll hang up my keys...like what decides that? The number of accidents?? Should I wait that long or give up driving before?

Anyway- I feel the same as you, but I tend to be more graphic in my vocabulary- calling it my "I don't give a &*%$ " stage. Everything seems to take so much effort- the hair, the makeup- I'd rather stay home, I don't have to "be" someone I'm not or "do"whatever everyone thinks I should be doing. I think it's ok to feel this way- call it what you want- it is you doing you, just as you want, plain and simple and I think you have earned that right!! You've done your time and deserve to veg out if you want, curl up with a good book, or a good dog, or with nothing...enjoy your days any way you best see fit. So what if you're being lazy, who cares? I think we all have that right to allow ourselves to "be" any which way we want to be at that moment- %$^& them!

You are a very sweet lady, always offering positive upbeat advice and good vibes. You enjoy you, you deserve it...just "be" for today!

Thank you Julie.  Your always so supportive of me.  

Obrien, my words can be more descriptive too, lol.  Catch me on a bad day and you could get an earful.  By the way, I quit driving when I almost crashed the car.  Accidentally pushed on the gas instead of the break.  Really scared me and made me realize that this could be dangerous and I could never live with myself if I ever hurt anybody.  So I did what I had to do.  Found out later I had serious depth perception problems so am sure that wasn't helping.  I think you will know when it's time.  And yeah I don't really care if it's apathy or laziness.  I just thought it would be a good topic that maybe someone else could relate to.  And they can thanks for your response.  

Thanks Bill.  I did judge myself for awhile, but then it got to the point where I just didn't care.  I think I like not caring better.  I do have to really push myself some days and I'm glad I do because most of the time once I am up and going I do pretty good.  I am taking one day at a time, like I am sure most of us are doing.  It's strange how much I have changed.  I use to be a social worker and also worked in the sleep lab doing sleep studies.  I was always so busy.  Now I can barely get through this up coming move to a new house.  It's all so overwhelming.  One day at a time.....   

ndhme, what a great idea.  I think alz+ said something about that once.  I would think it would make my husband feel funny, like a chauffeur or something, but I guess it would be better than hearing me grunt and yell, watch out all the time, lol.  Thank you for the tip.  Much appreciated.

Blue Skies....yes, at first it does feel funny as if we are taxi drivers but we adjust.  All that matters is if the PWDs anxiety and stress is minimized...

I am no sure it either apathy or laziness....but rather the disease renders much of the world much more than you can comfortably process and navigate.  I also would be quite content at home watching movies, writing, gardening...or even just siting silently staring at a wall. 

I find I like best staying within the circle of where I have absolute success my abilities tasks.  Travel outside that increasingly smaller-ing circle and I am working VERY hard.  It soooo HARD me go video support groups be "ON" for people...and I do no know how not be "on" because I get pulled in their emotion and I there with them.  I still LOVE my time with people...but I could sleep days after, exhausted drained.  That why I LOVE the forum....I can be "in" a conversation without having be "on" for people.  It about the perfect level for my abilities have conversation. 

 And they say, socializing so important us....and I certainly find that be true in my life.  My circle friends help me feel like I still part of the world and it have no completely passed me by yet. 

Apathy would be you see what going on in the world and you literally could care less....but are instead like...meh, whatever. 

Plus, you just were dx'd....it really DO take time recover from that...even if you doing ok with it.  I think it perfectly NORMAL want curl up in bed and do nothing but check FB or forum for a good 6 months, and stay in jammies.  

Just try love you self where you at.  Think of you self as a most beloved friend that you charged with take care of, and treat you self as you would her. 

<3

Re passenger car...yeah, that a HARD one.  I literally cannot cope with my daughter's driving.  I feel like ANYTHING I look at...be it oncoming cars, or even the houses on the side, are going jump right out and hit my body....not the car, me.  It have be hard wiring in us....but panic would be a huge understatement.  I don't make adrenaline, which probably a good thing, or I am sure I would explode my heart try be passenger.  Instead, I feel major sick...and like narcoleptic need sleep...like I have no slept for year.  And it completely impossible for me function after a ride in car her.  My poor daughter....there just no words tell her it no her. 

I have sit in back seat, not look out, I take Ativan, and I go in my mind somewhere else so hard that I am unaware of what going on around me.  I saw some youtubes of a French guy dancing with a bunch of horses loose on a beach...that been my scene I go in. 

The Ativan DO affect me in make me progress more....skills lost soon after I take it that I never get back.

<3

When I was in that post dx time....I had so many emotions, some rather intense ones.  But I never had any place or person express them with who really understood...which was doubly devastating for me as just be dx'd....but be d'xd and all alone in it....and is why I try be that safe place for others. 

Because there no place where people understood or that I could get support with how it felt be dx'd....I mean hell, people were even uncomfortable with me saying I am really f'ing scared about dying.  I, like many others dx'd dementia, have shove my feelings down inside...put them in boxes, and wrap them with pretty little bows....make them socially acceptable and palatable for those who non-terminal. 

I found an outlet in focusing on others needs .  Like my mom, or my grandbaby, or the Dementia Rights Cause.  It give me something focus on so I don't have think about how scared I am that I am progressing...or any of the other number of things that come along with being dx'd terminal.  What I can still do for others, allow me feel I have some worth and a reason for being.

I can not tell you how many times I thought seriously about leaving everyone behind and running off the islands around Hawaii, in that post dx time...I dreamed of a deserted island.  I just wanted lay in the warm sun beach and eat mangos all day and never once talk another human again.  If I could have layed in bed all day in my jammies - I would have!  But I had take care my mom and rock the baby....I had get the groceries....but I needed curl up in bed and just cry.  But my mom needed my smile, my daughter needed me be strong, and my granddaughter needed my loving presence...there was no room for me have feelings of my own.   A dementia dx definitely was nothing like a cancer dx, where people circle around you and get that you are suffering. 

There are like 1,000 layers the shock you go through....1,000 layers the hurt, loss, grieving....1,000 layers of pain, and anger, and outrage....and 1,000 levels of alone you will feel.   

Many months post dx, I went back my chronic illness wellness group (I had been one of the original people group)....I had have someone else drive because I could no longer drive self there.  Many new people have joined group including a number of stage 4 cancer people.  They got me, everyone got me....but they totally got my feelings and didn't bat an eye at them or skip a beat.  For the FIRST time since dx...I got validation that what I was going through was perfectly normal. 

Who would have thought that being told you going die was something you'd have heal from....but really, it is. 

There are just things that people who have been dx'd terminal experience and go through that people who haven't don't.  And although the world get that when a person we love dies, we suffering in ways that they could never hope understand...no one seems get upon dx'd our future died...and the death of one's own future is unlike any other death one may experience. 

So yes, it is PERFECTLY understandable that you want stay nested in bed all day every day.  You grieving...and no one gets tell you how do it.  There no one way grieve the loss you future...you get decide that for you self as you go along. 

But you will eventually find you feet in this new reality, in time.  You will start look back out at the world, in time.  Eventually, one day, likely many months from now, you will begin wonder what do with the time you still have.  But it take time get there.  I personally think, that the time get you affairs in order...not while you still deep in grief.  Technically, you have until you lose legal capacity do so...which will usually be a long time many people. 

I get by, one day at a time...one minute at a time.  No matter how I feel inside, no matter how hard I find it carry on some days...invariably the sun still rises...I still wake up....my bones still support my weight...and the world keeps turning.  One day at a time...a minute at a time if need be.

Someone once said, "when you find you self in hell, just keep walking, and eventually you will get out the other side." 

Alz+ once had a post, where's our party?  Maybe we can throw our own???  

<3

Beautiful post Sun.   You explain everything so well.   You really get me and understand totally.  

Oh yeah, let's have our party! 

I get it Blue Skies.  I am right there with you.  I especially relate to the car riding experience.  I am ready to opt for the blindfold option!  It's just so scary for me and frustrating for my husband.

I am disengaging a lot more these days but am trying to pull myself out of it.  Maybe if we all work together we can make it through.  Power in numbers, right?

Hang in there!

--Lynda

Yes Lynda, power in numbers!  

You hang in there too.  

Blue Skies and all,

( FYI..caregiver here)

Thanks for this post and discussion. Apathetic....for the most part this is the emotion I would use to describe my Mom...she is way past being able to verbalize like you all have so Thank You! This is why I like reading this Younger Onset Board...to understand better what my Mom may be feeling...and also , selfishly, to prepare for what may be my future sometime. I know that not being a PWD , I cannot really offer you support like your peers do, but wanted to say Thank You for sharing. 

I did recently watch a webinar by Banner Alzheimer's Institute about emotions in ALZ and they suggested that Apathy may be easier for the PWD than other emotions....to your point, Blue Skies. Not being a PWD, I don't know, of course...but I can say that this made sense in times I've seen with my Mom.

Heartfelt Hugs,

Sandy

Thanks for starting this thread BlueSkies, it has been very educational for me, and thanks to all of you who shared your personal experiences in your posts.

Until I became part of this forum, I really did not understand the true meaning of apathy.

This past summer, my wife was gone for several weeks, while I was home. There were several easy projects I needed to get done. Each morning I would tell myself today is the day, but by night time, I would be saying tomorrow I will get it done. I was very content sitting in my chair, doing mostly nothing. I just figured I was being lazy. 

Last month, my wife knew I wanted to clean out the garage, but also understands my dealing with apathy. So when I came home from the store one day, she was already working in the garage and that spurred  me on to finish the job that only took about one hour. I had to help, because I was not going to let my wife who suffers from Multiple Sclerosis with heavy fatigue, do my job. 

Today, I read two studies, one from 2006, the other from 2012. Both concluded that those with MCI, who suffer from apathy that is not caused by depression, have a much higher percentage of progressing to dementia. Just what I needed, another study telling me my odds keep going up.

Blueskies,

Don't feel lazy and don't judge yourself like Bill said. There have been prior discussions on the board relative to this topic for good reason. What your experiencing is a common denominator. One issue that came up is that some members noticed it is easier to get up and get going for someone else than for ourselves and that while we may experience apathy we may also be experiencing a gain in that we have an increased sense of altruism toward others? I wish I had the energy to look up those old posts! Alz+ and others shared some very insightful information on this topic. BTW I'm snuggling up watching Lucky Dog and I have not set my bar very high today to get much done. 

((Hugs)) Sandy, you have always been a most welcome CG here.  As a gramma a baby dx'd autism...I now get what it must be like for you look at you mom and be scratching you head wondering what going in in her mind.  I likewise love reading blogs and FB feeds by autistic people help gleen some insight my granddaughter and her needs.  And I personally don't see support as being exclusive....you might not get what it like be dx'd terminal...but you certainly can support me in having a meltdown about it, letting me know it ok have feelings about it.  If that makes sense.  Rumi say, "we all just walking each other home," and I think that true. 

I would even venture say, we could use caregiver support in keeping this space a place where it OK for us talk about what we going through....as some still seek shut those conversations down...and the perception us, is because we dx'd we can't possibly know what we need talk about. 

I have LONG ached that caregivers are no allowed the PWD support groups where those conversations abound more freely....because there just sooo much be learned.  I just think a lot more could be accomplished if we all started share more openly. 

https://www.youtube.com/watch?v=hB7FNtnL6m8

<3

I have lived with depression all my life and for the longest time would denigrate myself as being lazy until I learned about abulia, apathy, inertia, low motivation as being part of my illness.  The same happens in the dementia process.  I like to read scientific articles and I found this one that explains these "behaviors" in great detail.  It's long but chock full of great information.  I hope this helps with understanding.

http://www.yaroslavvb.com/papers/marin-disorders.pdf

I have been searching for years for a new term instead of apathy, because that word comes with such negative connotations.  Nevertheless, it is a fact of the dementias, and is indeed different from depression.  One thing that happens is that PWDs have a hard time initiating an activity.  I don't know if there is a professional term for this.  I just call it the "don't want to dos," as in "I don't want to do X."

I have found that I can go a long time without initiating a necessary activity, which can be called procrastination, another word with a negative connotation.  As Ilee noted with doing something for another, I have noticed that when an task comes to a critical point, I can perform it.  For example, I delay putting gas into my car, until I am running on fumes.  Then I can put gas in the car.  It's not that I can't do it, it's that I don't do it.

I have discovered two very important solutions for getting things done for myself.  1)  I break a task into steps.  2) I don't worry about completing a task, I just think about doing the first step.  I notice that often, once I begin, I can continue.  Even if I don't finish, that's okay.  The important thing is that I started.

I have pointed this out to the caregivers often.  If they can start their LO out on a task, the PWD may be able to continue on her own.  

The other thing that I do is to accept that I don't have the overall capacity to perform the high level of activity that I used to do.  I have to pick and choose what I want to accomplish.  Tasks have to be less complex.

Iris L.

Very good information and insight Iris.  I really like the idea of getting started with a task even if you don't get it all done.  I will try to get off my butt more and at least make an attempt!

--Lynda

That a great point, Iris.  

I have the same issue...but haven't really tried articulate it writing I don't think.  But I have tried explaining it my workers ad infinitum. 

It not that I don't want do task, it not that the task do not need get done....and it not even that I can not conversationally tell you all the steps that needed tasks.   I think it something much more literal missing.  At least for me. 

Like...literally do I have time do it right now, literally what are all the ramifications do it (like, if I move those things will I still be able function, will this still be my house?)....like there are just 1000 more steps than the actual task itself that I don't have. 

I have been real stuck with this new progression and no being able do anything I did before here....and clueless how move forward.  My workers USELESS....they sit and chit chat me or take me way off topic, only for bring up at end of time, we did no do thing.  I even say them...I need you NOT go off topic me....and that you need keep me on task.   I have resorted sit here list them over over again what need be done....and nothing.  My daughter even say that lady should take notes. 

I am way more type a than it be laziness...I am just literally incapable without prompting and cuing.  New symptom is ONCE things moved....I have anxiety...because now things look different.  

I am real come NOT like this anxiety feature Alz. 

<3

Painted for several hours, ugh, no fun  Now back to my comfort zone.

Sandyjm your always welcome here and thank you for your response and glad we can help. 

Andy59, your welcome.  I am getting educated as well with all the responses. 

llee, thank you.  Sounds nice snuggling and watching lucky dog. 

Agent 99, thanks for your input.  Hope your depression is under control.  That's definitely a symptom of depression too.  

Good post Iris.  I found that once I get started I'm usually fine, though I definitely can not do as much as I use to.  I like the idea of breaking things down in steps.  Maybe won't feel so overwhelming that way.  

Yeah Julie, that's my biggest problem, getting started.  Thinking about doing things seems to be worse than actually doing them.  

Iris - finding a new word that is not negative!

Temporary Immobilization

Bed Lock (    )        

....

not coming up with anything but this should be a topic, searching for words that describe common aspects of illness with positive and even humorous terms.

When I am traveling inside and not very extroverted I use Sherlock Holme's term: "I am in my mind palace"

definitely a group effort to come up with new terms! and then to remember them once we log in! ha!

I recall Matisse ? when asked about sitting for hours on  park bench he said "I am painting". the man the said, "What are you doing when I see you here with your paints?" he said "thinking".

********

anyone else find themselves holding their muscles tight? rigidity?

Obrien!

I forgot what you mentioned that I recognized! darn it.

hey, how about when you walk to kitchen to make a sandwich and find yourself sorting newspapers? I intend to wash out bathtub and end up walking dog. Going to take a med and come back with a sweater.

oy vey! so maybe if we could develop something like weight watchers food exchange? Like today I plan to wash dishes, when I  want to box up some stuff to mail. I sort of set off to do things but do something else.

in the end no one cares what I do but I still love laundry!

Alz+, I love the term Bed Lock!  or Chair Lock, since I'm usually in my chair.

Holding the muscles tightly is due to muscle tension.  Try your muscle relaxation techniques.

Examples: massage, stretching, warm bath, progressive muscle relaxation.  These all have helped me with muscle tightness.

Iris L.

Iris - is that true? it is releasable tension? I thought it was the stiffening I saw in my Dad.

I plan to get massages and I do stretch, walking a mile helps, swimming helps. I thought I would eventually get all stiff like my Dad but maybe not.

My  tendons are always tight, I took Levaquin years ago and had tendonitis for a year, I don't think it ever went away in my arms.

I have tried massage and shaking them out, exercise, stretching but they are still tight.

Alz+, after you walk or exercise, you have to s-t-r-e-t-c-h!  Our muscles contract from exercise, and they need to be stretched out again.

I never had trouble with my extremities until after lupus.  Now I have trouble in various areas.  A few years ago, I began to have a frozen shoulder.  It had cleared up completely, but now has returned.  I just continue to massage and stretch and do range of motion exercises, also heat packs when necessary.  I have to stretch and massage all my extremities to keep myself limber.  I also have to keep a close eye on my weight.  I wish I could swim like you, in the winter.  Swimming in great for mobility and flexibility and good use of the limbs!

Iris L.