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Whats Normal Anymore?
obrien4j
Posted: Sunday, December 18, 2016 1:38 PM
Joined: 11/18/2016
Posts: 451


Good Sunday All,

How do you get control of these moods that come on so suddenly. I've akways been a bit moody but this is ridiculous. One day I'm strong and fierceness and the next I'm mush...balling like a baby. I am so easily frustrated and impatient, for absolutely no reason-unless you're talking about my middle schoolers and then I'm too patient! I feel like I'm jumping out of my skin sometimes, so short out of the blue that I hate myself.I keep hearing that I should cut myself some slack and I get that, but is there something I could do that would prevent this from happening. I sound so ignorant saying this, I know it's part of the disease, but I just want to find some part of normal in all of this. 


Iris L.
Posted: Sunday, December 18, 2016 1:49 PM
Joined: 12/15/2011
Posts: 16600


Normally I'm a very mellow person.  I only get upset when a another person pushes my buttons.  So I avoid such people.  I realize many people don't have that option, or choose not to use it for their own reasons.  


Can you analyze what is causing you to become moody, and figure out how to avoid or counteract it?  Think of ways to soothe yourself and to pamper yourself.  Music works wonders to change mood!


Iris L.


julielarson
Posted: Sunday, December 18, 2016 1:53 PM
Joined: 9/30/2015
Posts: 1155


Obrian, please take it easy on yourself and yes cut yourself some slack.. All of this is going to take time and you will find your way. I think you are still waiting on seeing a specialist and that will go a long way in helping you to see what way to turn after that.. Let yourself be for now.. I know that this sounds like something out of left field but it is true. I have been wondering and waiting and looking for answers for over a year now. .. At first I must admit I did not look at it or for answers because I was not even willing to admit something was wrong. I told them I have memory problems and did not seem to hear what the problem was or what to do about it if there was something to be done. I more or less put my head in the sand for about two years and all of a sudden woke up to find that I was still where I was and that I needed to get some help with this because it was not going away. You are ahead of the game as far as I can see because it is obvious to you that there is indeed something wrong and you are hooked up to this site and people are here to help you on your way. All you can do right now is do your very best and for the rest cut yourself some slack as I said earlier.. I would reach out and give you a hug if I could but I will give you a cyber one instead.
Mimi S.
Posted: Sunday, December 18, 2016 3:23 PM
Joined: 11/29/2011
Posts: 7029


Jean, See what you feel like next week when a lot of pressure will be off.

How are you doing on Best Practices?


grandmalynda
Posted: Sunday, December 18, 2016 3:42 PM
Joined: 12/3/2016
Posts: 374


I don't have many suggestions for you right now but did want to let you know that I Totally understand what you are describing.  I am just very greatful that we have this forum for understanding and support.  Hang in there and know that you are cared about.

--Lynda


Rightmind
Posted: Sunday, December 18, 2016 5:25 PM
Joined: 5/19/2015
Posts: 11


Frustration like you are describing happens sometimes when we push ourselves beyond our abilities. Adjusting expectations is one of the hardest parts of this illness but it seems to get easier once you let a few things go and see that the world does not stop revolving, we find it easier to let go of the next things. I believe that frustrated outbursts have triggers. For me, it is getting easier for me to avoid the triggers. Not 100% of the time but it's better. For me, I had a pretty deep understanding of cognition before This started so I tend to get really mad because there is not a lot of logic that I can wrap my head around. I really appreciate all of the feedback from others here too.
Rightmind
Posted: Sunday, December 18, 2016 5:30 PM
Joined: 5/19/2015
Posts: 11


Besides my other reply, I have been on the Exelon patch for a few week. Was diagnosed over a year ago. Since I feel sharper and less confused, I have less incidents of intense frustration which makes outbursts and crying happen less often than before.  I went on medication kicking and screaming because I don't like to take pills but for me, this has worked. Others have experiences with Exelon and other medications and they know better how others might fare on them.
BlueSkies
Posted: Sunday, December 18, 2016 10:26 PM
Joined: 2/24/2016
Posts: 1096


I find I have a lot more trouble with the mood swings if I am not eating right, getting enough sleep or under too much stress.  As Mimi has pointed out, make sure you are doing best practices.  It does help with the "crazy moods".  

Hang in there.....


The_Sun_Still_Rises
Posted: Monday, December 19, 2016 6:34 AM
Joined: 7/24/2015
Posts: 3020


Dementia cause you lose you ability regulate you emotions - few people, or caregivers realize this, and it often no talked about.  But as you lose parts you brain, you lose all those great many things you learned along the way how deal and cope with things.  It starts becoming manual...you have on purpose, re-remember...and re-find you way through the emotional mazes. 

I likewise avoid negative people, as a single negative comment can take me 3 weeks recover from!

It also a part of losing communication skills...also no talked about much (since the world still expects us be able hold it all gether)...but the self talk we do, when someone say something wrong...the self talk we do that make it ok....that seems go. 

So yes, this normal....very, very normal. 

You also might want google FTD Behavioral Variant. 

In the end, if it bother you....YOU will have find a way deal and cope with it....you will have find a way through this new landscape....and that takes time.  There is no short cut, unfortunately.  One step at a time.

People say cut you self some slack....but what they really mean is this....BE KIND YOU SELF....be as kind you self as you would a dear, dear friend who got this and had this happen them.  <3

Hang in there...it really does get easier with some mileage under you belt.

<3


BillBRNC
Posted: Monday, December 19, 2016 7:44 AM
Joined: 12/2/2015
Posts: 1018


If you asked my wife, I'm sure she would tell you that the worst part right now is the mood and behavior changes, how quickly they can change either way, and how the least little thing done or said can set me off for a minute or two or longer, sometimes explosively. I try to keep things around me as calm and uncomplicated as possible. I hate being asked questions or talking on the phone, so I try to avoid both. I have real problems with anyone coming into our house other than my wife. I don't even feel comfortable if my son and his family come into my safe space or my peaceful space. I meet them places for very short visits for I fear doing or saying something bad in front of grandkids. It is terrible, but I don't know how to get around it. I skip most parties and events, but I encourage my wife to go without me. I am just fine at home alone with my dog Doc. Going for walks is my main thing. I like eating out, but I like doing it only with my wife or alone if she is gone for some reason. We do socialize a little with a very small group of couples, but usually just one couple at a time, and not all that often. I keep encouraging my wife to be aggressive in protecting me from stuff, but she still has some trouble understanding just how little the stuff can be and still mess me up. It is a work in progress I guess. I hate this, I really hate it.
Mimi S.
Posted: Monday, December 19, 2016 8:07 AM
Joined: 11/29/2011
Posts: 7029


Hi Bill,

I just want to comment on your relationship with your son and his family.

Your son and spouse know your diagnosis. Please do not shut them out.

Do have them read Naomi Feil, any book that has the word Validation in the title.  

Ask them to use her method with you and see if it helps.

Depending on the age of the grandkids and their ability to be hurt, there is more ability to distance them from you, if necessary, in your own home.

 

 And, of course, you worry about inappropriate behavior. The more you worry the tenser you get and the more likely the behavior.

There are other folks in the world who exhibit inappropriate behavior as part of their symptoms, ex. Tourette's. We are slowly educating the public as to the meaning of the behavior. 

Maybe this can be a goal for you, to slowly educate those around you as to the particular type of dementia you have.

 

 


BillBRNC
Posted: Monday, December 19, 2016 8:32 AM
Joined: 12/2/2015
Posts: 1018


Mimi, of course you are total right. I'm trying to take a reasonable course by doing what I can whenever I can with grandkids. I actually go out to dinner almost every week with my son and his wife (I take them out that is), while my wife babysits, so I've had a number of ongoing discussions with my son and his wife. The problem is when I go in their house or they in our condo I just seem to start going crazy inside, so I try to keep our visits inside short and our visits outside longer. I also still drive so long as I don't go much more than a couple miles away from home, and my wife and I frequently take separate cars when we go to their house, so I can leave when I feel like I'm about to lose it. Thanks for the book suggesting. I gave them a small thing from NIH that was done for families late last year. It is simple and to the point. Someone here probably recommended it. Happy Holidays and Merry Christmas to all.
Michael Ellenbogen
Posted: Monday, December 19, 2016 10:01 AM
Joined: 11/30/2011
Posts: 3452


What is normal. Normal to me is whatever that day will be that I am living in. I try to not let it get me upset by focusing on what it could have been like but what it is and to know while it is much worse today it will be a hell of a lot worse in the future. So today is actually a great day no matter how bad it may seem now. Not sure if this help you but we need to look at al this very differently.  

 


BillBRNC
Posted: Monday, December 19, 2016 10:22 AM
Joined: 12/2/2015
Posts: 1018


Michael is right again. What is normal? Normal for us is whatever we are experiencing at the moment. There is no good outcome here, as it is steadily downhill. On the other hand, some days have a normal that is a tad better than some other day's normal, so we should enjoy it while it last. I try to be pragmatic about how terrible this is and how much worse it will get, but then I also try to focus on getting myself to enjoy the moment as best I can and to not dwell on the truth. Some days I do better at it than others. Bill.
julielarson
Posted: Monday, December 19, 2016 10:25 AM
Joined: 9/30/2015
Posts: 1155


Merry Christmas Bill .. in fact Merry Christmas to everyone here..
Mimi S.
Posted: Monday, December 19, 2016 3:23 PM
Joined: 11/29/2011
Posts: 7029


I do like almost all of Michael's philosophy.  I refuse to think about that tomorrow will be worse. Today is the day.
Iris L.
Posted: Monday, December 19, 2016 8:25 PM
Joined: 12/15/2011
Posts: 16600


Ditto, Mimi.  I think Michael's on to something.  Today is a great day!


Iris L.


obrien4j
Posted: Monday, December 19, 2016 11:19 PM
Joined: 11/18/2016
Posts: 451


First off, I'd like to thank everyone for their constant support and encouragement. You have been my lifeline during the past month. You have helped me navigate  thru this hideous disease as calmly as possible, with your words of  encouragement. Quite honestly, I don't think I've had a more difficult time in my life than right now and believe me, I've gone through some stuff.  To all of you who replied and took the time to share advice and experiences, I thank you. 

Today was a great day. In fact, I played hookey. I called and said I was a little under the weather...cough, coughAnyway, I had a blast, went all over the city to get ready for Christmas. I was so excited, "remembered" to eat but was so busy that I didn't have time to get hungry! I was on a roll until dinner time and then it went downhill quickly. My driving became confusing, I felt disoriented, just did some weird things, unexplainable things that I'm sure you'd all understand and relate to.  Just when I think I'm on top of my game, I fall hard on my face to bring me back to reality. I try hard to convince myself that everything is good but I'm only fooling myself. It is so not good, in fact sometimes I think it's getting bad fast. I know y'all say this is a slow progression but it seems like I do some really strange things, so unlike myself. It's like there's some demon inside of me making me do "bad" things sometimes, does that sound crazy? Here's something even worse, its like my brain has a mind of its own....I can be doing one thing but my brain has its own agenda and may answer a totally unrelated question. It's hard to explain,but it's almost like the wiring in my has been altered and I can't control it nor do I know when it's going to kick in. 

The more I think about all of this, the less I know how to deal with it.I know what "has" to be done, I'm good with that. But I don't know how to deal with all these changes. I don't know how to be fine one minute and $&@#%* UP the next. Sorry, right now, I can't find the words, but that basically describes it.  Right now, I wish I didn't realize what was happening to me.

 


Mimi S.
Posted: Tuesday, December 20, 2016 8:27 AM
Joined: 11/29/2011
Posts: 7029


OK Jean,

Cut yourself some slack!!!!

You did too much and you paid the price.  You'll learn what is enough.

Take care.


Michael Ellenbogen
Posted: Tuesday, December 20, 2016 8:46 AM
Joined: 11/30/2011
Posts: 3452


The point is stop thinking about it and live life as it is. The more you try to figure it out the more your mind will snowball to more issues and make things worse. Learn to let go and tune it out. Laugh at yourself when you do those stupid things. It helps.

 


The_Sun_Still_Rises
Posted: Tuesday, December 20, 2016 9:17 AM
Joined: 7/24/2015
Posts: 3020


Well.....rather than assume you worse, consider for a moment that you spent a day doing things you do no normally do, did a lot, probably interacted a lot, which scatter you brain in 1000 directions....OF COURSE by evening you all discombobulated!  We all get like that. It par for the course. 

On a different perspective, look what you were able do....have a wonderful day preparing for the holiday.  How awesome is that?!

I find this week really hard be out....everyplace so full, people always moving right in front you path....and chaotic.  I have trouble understand things stores.  But I still be have do, I have no choice...so I plug away.

Every day, in every way I am soooo grateful that DESPITE my hardships brain and body....I CAN....and I STILL DO. 

I am sure for onlookers, I appear just fine....and when you get me talking on a subject I have handle on, I can sound real good and smart.  But if anyone had idea what constant array hardships I have overcome do all that....how my back and bones hurt, it literally hurts level 6 pain walk...and omg multiple times in out the car on my back! I have be constantly I a going this store get xyz...I have pre-planned, I know the store, I know where I am going, I have charted, gone over in my mind 100x before I go there....and when I go there, I go get and leave....god forbid someone or something change things up - like they moved something - then my whole week thrown off! 

But I come here/...I see the caregivers and their MCI spouse, or stage 4 or 5 person dementia....and I am filled with incredible gratitude that I did NO take THAT route - because lookee me and what I can be do at stage 6!

But again, we will ALL deal with this differently, and in our own ways, and ways that make sense us....but somewhere in the begining we have be decide for ourselves - HOW we going personally go forward in this.  And no one can judge (although they may try *smirks*) or say or comment....because it so personal for you....it YOUR life after all. 

But I knew if I sat around pouting, no only would I be wasting my life away MISERABLE (I think of time like money), would you spend money be miserable?  Then why spend you time that?  But no only would I be miserable, I would lose skills quicker....because you giving you brain the message that you have thrown in the towel and given up....and it responds accordingly by reclaiming those wires. 

I couldn't afford that in my life.  What would my mom do?  What would happen my daughter/granddaughter?  No, I had rally my internal self...and say fuck you dementia, fuck you Alz you no taking me down without one hell of a fight.  I will no go in dementia oblivion willingly....it will have take me kicking and screaming! 

I am sooo svcared what will happen that I STAY doing and I demand that my brain...I force it re-wire itself new ways stay doing things I need be doing.  It hard hard hard work - make no bones about it.  I work my tail off.  But I also have glorious results! And, I am on the cutting edge re-writing what is POSSIBLE dementia....like the guy who ran the 4 minute mile when no one said the body could. 

So YEAH, hell yeah it hard...it hard and it suck and it bites....so what?!  You can no change it....but you CAN take control it. 

The angst you have make GREAT fuel energy create a fighting stance against dementia you life.  Just some food for thought.

((Hugs))

<3


julielarson
Posted: Tuesday, December 20, 2016 9:44 AM
Joined: 9/30/2015
Posts: 1155


Sun, you are amazing!
obrien4j
Posted: Tuesday, December 20, 2016 12:14 PM
Joined: 11/18/2016
Posts: 451


Sun, I love it, you say it like it is! There are some days I'm not ready for your reality checks, but nonetheless, I really appreciate them, as I appreciate all of ya'lls comments. 

I put the "let it go" strategy into place right now. I was sending emails fighting the injustices of the world ( actually in my little world, but letting others know of my opinions and what is wrong !) and feeling pretty darn proud of myself. Like I've said before, something rewired in my brain this summer to cut out the BS in my life and just get to the point. I am always cautious of what and HOW I say things- still,  and if I feel what I have to say will help someone else, then I will put it out there. I go the extra mile way more than I ever did before, even for perfect strangers in need. Supposedly, a Leo by birth, I think I was put up for adoption at an early age because I've hated the limelight ,which is apparently characteristic of many Leos. Once I am there however, I thrive on it- it just takes a while to get out there. Anyway, age has allowed me that freedom to speak up more than I had before. And right now, in my present situation, I really don't care what people think as long as I am respectful and my intentions are good and pure. So I am saying what needs to be said....today.
I was in a meeting that became very overwhelming for me-my duties and responsibilities for next semester. Now, I know why I didn't want to come to work today...haha! Anyway, instead of allowing it to take over my day, I chose not to even give it a second thought. I don't even know if I'll be here next semester, let alone if God will allow me to wake up tomorrow. If anything, dementia is a real wake-up call to what really matters in life.
Your advice is paying off. 
Have a great day everyone!

grandmalynda
Posted: Tuesday, December 20, 2016 12:22 PM
Joined: 12/3/2016
Posts: 374


The support and caring here is fabulous.  You are all amazing people and we areall lucky to be in this fight together.

Merry Christmas and Happy Holidays!!

--Lynda


Wendy60
Posted: Wednesday, December 21, 2016 2:47 PM
Joined: 12/20/2016
Posts: 3


Where do I find Beat Practices?  I was diagnosed with early onset  early stage AD -- just got the diagnosis on Monday. panicky. ..

Wendy60


Wendy60
Posted: Wednesday, December 21, 2016 2:50 PM
Joined: 12/20/2016
Posts: 3


Oops. Best practices..
Iris L.
Posted: Wednesday, December 21, 2016 3:18 PM
Joined: 12/15/2011
Posts: 16600


Welcome, Wendy.  I took the liberty of reposting your post onto its own thread, in order to keep it from being overlooked at the end of this thread.  Look for "Welcome new member Wendy."


Iris L.