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I am not stupid
Topdogjim
Posted: Sunday, July 24, 2016 9:10 PM
Joined: 7/14/2016
Posts: 20


For many years now (as I look back and try to put pieces together) I believe that those around me, including family, friends and co-workers all looked at me as being stupid at times. I laughed it off inside as things were pointed out to me. Everything I did that they considered stupid can be explained away with dementia. When I was in college (culinary school) in the 80s, I was in the top 2% of my class of hundreds and a member of the silver keys honor society. In March I could not make a simple work schedule for 12 employees. 

I'm spending a couple of days at my campground resting, praying, listening to music, walking and thinking. 

My wife asked me last night how I was doing and I said, I know something is wrong and I have know for a few years. The dementia dx gave me a weird since of relieve and a little piece of mind that I am not stupid. 


Iris L.
Posted: Sunday, July 24, 2016 10:59 PM
Joined: 12/15/2011
Posts: 16575


No, Jim, you are not stupid.  You have something wrong with your brain.  It is just the same as if you had something wrong with your heart, or your pancreas.  Unfortunately, the outside world often doesn't look at it like that, and there is a lot of stigma associated with having a brain disease.  


We patients have to counteract the feelings that we have about the disease and the feelings we have about other people knowing that we have a brain disease.  Based on how I have been treated by my very closest friends, who are no longer my very closest friends, I have chosen not to disclose anything about my illness.  I blame all symptoms on systemic lupus, which people seem to be more accepting of as a disease process.


My testing scores show that I still have high intelligence, but that my processing speed is slow, and I have some other processing deficits.  I just looked at my report a few minutes ago, but I can't remember all that it said.  My recall is poor.  It's hard to go up to people and say, "I have processing deficits."  No one would know what I was talking about, nor even care.


 I did not fear being though stupid, but I came from an environment where putting in a strong effort was most desirable.  Being thought lazy or unmotivated or a slacker was a huge blow to me.  I was even accused of having a pity party!  That was devastating to me.



After many years and much soul searching, I have come to the conclusion that my basic personality and intelligence is the same, but that I am very slow now, and somewhat disordered.  So it's okay for me to make accommodations to compensate.  Anything that I need to do to have a fulfilling life and to remain independent is OKAY to do!



Iris L.


llee08032
Posted: Monday, July 25, 2016 9:00 AM
Joined: 5/20/2014
Posts: 4405


Jim,

You're here, seeking information and support! Proof that you are resourceful, and certainly not stupid by any means. Proof that you are searching for the strength and courage to face what lies ahead. 

Others thinking we are stupid is part of the ignorance and stigma surrounding the dementias. 

I come from a background of poverty and illiteracy so I fell into the "I'm not good enough" and "I'm stupid" trap at the beginning of this journey. Alz+ taught me about quickly forgiving myself and the results of doing that are quite astonishing at times.   

Quickly forgiving ourselves should be incorporated into best practices!

I  feel I have enough to deal with and simply put, I refuse to take on the negative projections of others. 

None of what is wrong with you is your fault. Quickly forgive yourself when you blunder, make mistakes or forget things and let the shame go!

 


Iris L.
Posted: Monday, July 25, 2016 12:52 PM
Joined: 12/15/2011
Posts: 16575


A great deal of the shaming comes from other people.  I find that I still have to put up barriers to block the shaming and guilt-provoking from others.  It is a continual battle.  That's why we must persevere in lifting ourselves up, and in lifting up each other.  We won't get support from the outside world, even our friends and family.  


We are strong people!  We are the same people were before, just a bit different. We can compensate, and do what we have to do, in order to have enjoyable, fulfilling lives.  What others think is enjoyable and fulfilling may not be what we think. so we don't have to follow the old crowd of people.  We have new priorities.


We don't have to spill our guts to everyone, because they just won't understand.  I have found that even professionals who work with seniors, don't really understand us.  This is why I rely so much on my cyberfamily here.  You all are the only ones who understand me.


Everyone, keep posting, and keep lifting each other UP!


Iris L.


alz+
Posted: Monday, July 25, 2016 1:28 PM
Joined: 9/12/2013
Posts: 3560


Jim - what a beautiful post!

Do you still cook? 

Would like to know more about your campsite. Just read another article on how being in nature heals - trees in fact give off an essential oil that when we inhale it strengthens our own immune system.

Also when you are out in the natural world and see an owl or sunset or whatever and we feel a sense of AWE - that triggers healing mechanisms. I find AWE every day just taking walks in my rural neighborhood of trees.

People in hospital rooms with views of trees healed faster than those without a view.

Cloud formations, weather changes, auroras, the stars, seeing a comet - all these things create awe.

I imagine your cooking created AWE and wonder if your campsite food is fabulous?

Sometimes I think I am brilliant and wonder why the expression on people's faces no not reflect how brilliant I think I am. Ha!

One thing I noticed was we can forget to smile. I do a once a week check in the mirror to see if I have the Stone Face. When I do get the Stone Face (which does not look smart) I practice smiling. I also find myself trudging.When that happens I practice walking in a stronger stride, or even doing some dance moves on the dirt roads.

When I screw up I do follow my spiritual path which teaches Mercy. When I say or do things that are foolish or stupid I practice Quick Forgiveness, even if none is even in order. 

Please share more. Very interested on your take on this. We can all learn from what works for us individually.

love and courage


Topdogjim
Posted: Monday, July 25, 2016 3:14 PM
Joined: 7/14/2016
Posts: 20


I have been very moved by nature my whole life. I was blessed to grow up near the ocean on the east coast. Also spent many weekends camping and hiking with the scouts. Today's camping is in an RV with a/c and all of that. We do still cook over the fire when I have a helper. I have started walking daily since my dx and the campground has 400 sites with lots of great views. It appears we have a red tailed hawk that flies over daily.
Iris L.
Posted: Monday, July 25, 2016 7:12 PM
Joined: 12/15/2011
Posts: 16575


Hi, Jim.  I just came back from Staples where I faxed my tax data to the accountant, because I requested an extension in April.  I have the same trouble as every year--gathering the paperwork.  This year, I will be using the standard deduction, because I don't have all the scraps of paper for the itemized deductions.  


I always ask myself, "How hard is it to gather a few scraps of paper together and put them aside in a folder or envelope at the beginning of the year?"  Yet, each April, I find myself scrambling around, searching for these scraps of paper.  Why not just go online, you ask?  I haven't gotten that sophisticated, yet.  


It's not a matter of stupidity.  I did find a lot of the papers I needed in the piles that I have scattered about.  My problem is not attending to the paperwork when it comes in, and letting it get lost in PILES.  


Just the other night, I found an uncashed check for $2,000, and set it aside.  Now I don't remember where I set it aside.  This is not stupidity, but not remembering.  When I do something, the thought is strong in my head.  Then gradually, the memory fades.  It's like my memory is made of disappearing ink.


Jim, I don't think you told us your age, or I already forgot it.  I felt bad about not working for many years, until I reached the age of 55, which is an age when many people around me take early retirement, so I could feel that I belonged in that group.  Now that I have reached my regular retirement age, I don't feel uncomfortable at all about no longer working.  I realize, that for a younger person, this will be a hard area to accept.  Not to be working seems to be very bad.  But it happens.  


The other thing is that dementia is an invisible disability.  If we were in a wheelchair, no one would question us if we stopped working, or if we needed a bit of assistance.  But our disability is hidden, and its effects look like mistakes that we make.  And other people look down on that.



Just keep telling yourself, Jim, that you are doing the right things for yourself, and that others don't see what you see about yourself.  Try to ignore the naysayers.  Stay positive, and keep making plans for yourself.  Figure out what accommodations you need.  Find what makes you happy, and do it!  I believe you are already doing it, since you are at the campground.  If you are by the ocean, even better!


I used to be able to get away to the country and the shore on weekends and in the summer when I was a child, but not so much since.    That's why I like to go on trips with the senior center.  I don't get away too much on my own nowadays.  I spend my time in the concrete jungle.  This is what I'm familiar with.  But I've got to break away.  Concrete is not fulfilling!


Iris L.


BlueSkies
Posted: Monday, July 25, 2016 10:05 PM
Joined: 2/24/2016
Posts: 1096


I spend the majority of my time in nature.  I love being outside, especially with my animals.  I don't care what's wrong, if I can get outside I will feel better.  When I am out in nature nothing bothers me and I feel like a young child exploring the world, in awe of everything.  It's where I feel my best.  
a_step@a_time
Posted: Tuesday, July 26, 2016 6:58 AM
Joined: 11/21/2015
Posts: 237


 I TOTALLY understand.  I'm undiagnosed but have autoimmune disorder (hashimoto) .... Maybe even lupus from what a couple people have asked over the year.  I also am loosing friends.  Why don't they just call it what the new terms are, a brain injury due to illness, or side effect of illness, or immune disorder. 

I'm heading into my next loss phase and I say shame on the medical field for not doing antiviral studies and shame on the political field for not legalizing death with dignity for us and shame on whomever can create something new to help us help each other, like develop dementia villages or ???.

We have to spend what remaining 'healthy' years we have left on trying to defend our intelligence and earned education.


a_step@a_time
Posted: Tuesday, July 26, 2016 6:59 AM
Joined: 11/21/2015
Posts: 237


 I TOTALLY understand.  I'm undiagnosed but have autoimmune disorder (hashimoto) .... Maybe even lupus from what a couple people have asked over the year.  I also am loosing friends.  Why don't they just call it what the new terms are, a brain injury due to illness, or side effect of illness, or immune disorder. 

I'm heading into my next loss phase and I say shame on the medical field for not doing antiviral studies and shame on the political field for not legalizing death with dignity for us and shame on whomever can create something new to help us help each other, like develop dementia villages or ???.

We have to spend what remaining 'healthy' years we have left on trying to defend our intelligence and earned education.


a_step@a_time
Posted: Tuesday, July 26, 2016 7:00 AM
Joined: 11/21/2015
Posts: 237


 I TOTALLY understand.  I'm undiagnosed but have autoimmune disorder (hashimoto) .... Maybe even lupus from what a couple people have asked over the year.  I also am loosing friends.  Why don't doctors just call it what the new terms are, a brain injury due to illness, or side effect of illness, or immune disorder. 

I'm heading into my next loss phase and I say shame on the medical field for not doing antiviral studies and shame on the political field for not legalizing death with dignity for us and shame on whomever can create something new to help us help each other, like develop dementia villages or ???.

We have to spend what remaining 'healthy' years we have left on trying to defend our intelligence and earned education.


a_step@a_time
Posted: Tuesday, July 26, 2016 7:07 AM
Joined: 11/21/2015
Posts: 237


Oh my new life struggles.  Now its with T-Mobile for bad connection service and now I see new issues.  Ugh!  I bet millennials do this stuff on purpose.
a_step@a_time
Posted: Tuesday, July 26, 2016 7:07 AM
Joined: 11/21/2015
Posts: 237


Some dorky care less kid at the T-Mobile mobile store has my personal info... Lets see if there is another data breach. Ugh...But I digress.  These nonbelievers have me even doubting my own intelligence!  We need to find new humorous term. (My tablet reboot said application removal but not what the app was!)
Topdogjim
Posted: Tuesday, July 26, 2016 7:34 AM
Joined: 7/14/2016
Posts: 20


I am 59 and will be 60 in January.
Iris L.
Posted: Tuesday, July 26, 2016 11:41 AM
Joined: 12/15/2011
Posts: 16575


Jim, you fall into the category of early onset.  Many older PWDs are already receiving a retirement pension.  Younger PWDs may have to apply for a disability pension, if they don't have other income.  


Iris L.


The_Sun_Still_Rises
Posted: Wednesday, July 27, 2016 1:24 PM
Joined: 7/24/2015
Posts: 3020


I languished for 6 years before I got a dx...and all through was feeling increasing sense of helplessness in being able get help...I just couldn't understand.  When I finally got dx'd...I also felt a huge sense of relief. 

Granted, no one wants be told they dying...but I already knew I was (as I was growing worse each year)...now it has been over a year of knowing...and I STILL feel a relief in knowing. 

I add that with a new sense of freedom as well. 


a_step@a_time
Posted: Wednesday, July 27, 2016 2:16 PM
Joined: 11/21/2015
Posts: 237


And a new aha for today... My problems in getting correct words out in conversation are now leading to people thinking I'm lying to them! Ugh this illness sucks!  It's getting harder to defend myself and my 'undiagnosed' illness.  I don't want to give up but....
Iris L.
Posted: Wednesday, July 27, 2016 3:19 PM
Joined: 12/15/2011
Posts: 16575


Step, that caused trouble in my marriage.  My husband thought I was playing games on  him when I could not remember serious conversations that we had had the night before.  I was unaware that he thought that way until after we were divorced.


Iris L.


a_step@a_time
Posted: Wednesday, July 27, 2016 9:42 PM
Joined: 11/21/2015
Posts: 237


OOh yes Iris. I lived this too, when caring for my ill parent.  I noticed (but doubted my intelligence) that family dynamics were impacted by dementia parent and unfortunately my male siblings had no clue of it even after i told them after parent death, and they let this dynamic (illusion) continue.  But then again the SILs let it continue too.  
Iris L.
Posted: Thursday, July 28, 2016 1:27 AM
Joined: 12/15/2011
Posts: 16575


One day in the future these conversations may become commonplace.  But never doubt your intelligence.  Our illness may cause us to have less confidence in our senses, in what we see and hear and touch.  But we still have the capacity to think and to figure things out, even if we are slower.  In the meantime, don't stress yourself with conversations that go nowhere.


Iris L.


NancieJ
Posted: Thursday, July 28, 2016 2:43 PM
Joined: 7/28/2016
Posts: 4


I am not stupid caught my eye.  I must say that to my boyfriend fifty times a day.  I don't know why it's so hard for people to understand that having very little memory and being in a constant state of confusion does not equate to being stupid.  He always looks stunned when I can figure something out.  If I ever forget how to Googke I'll be in trouble, but right now I'm fine.  All my friends (and family) seem to have dropped off of the face of the earth as well.  It's a relief to see that there are other people out there like me.
Iris L.
Posted: Thursday, July 28, 2016 3:25 PM
Joined: 12/15/2011
Posts: 16575


Welcome to our online support group, NanciJ.  I hope you will be encouraged by our fellow members, and in turn, become an encourager yourself.  What you are noticing is very common for us.  I'm sorry you have to experience this.


Can you tell us more about yourself?  You can begin you own thread by clicking on "Add Topic" on the main "Younger Onset AD" board.  Then more members will be able to meet you.


Iris L.


Mimi S.
Posted: Thursday, July 28, 2016 7:24 PM
Joined: 11/29/2011
Posts: 7029


welcome NaMCI

Do as Iris suggested, begin a new post and tell us about yourself and your diagnosis.


Topdogjim
Posted: Friday, July 29, 2016 6:54 AM
Joined: 7/14/2016
Posts: 20


How true and sad, "He always looks stunned when I can't figure something out". I guess I have learned to accept those looks. Maybe that's why I felt a wierd since of relieve when I was dx.
alz+
Posted: Friday, July 29, 2016 7:22 AM
Joined: 9/12/2013
Posts: 3560


that look I get when my speech goes south...

My husband has been very patient lately waiting for me to make sense of what I am trying to convey-and now THAT makes me self-conscious. Ha! But I appreciate it, knowing he understands this is progressing.

I recently got swept into a neighbor's house by the husband who wanted me to see bathroom remodel but his wife did NOT want me in her way. Her dogs jumped on my dog and I was so startled which made me talk nonsense to her and aggravated the situation.

Also (thank you Iris!) I let go of a 45 year friendship this past week. We met in California and maintained long distance friendship over the years through daily email and letters .

He began badgering me more and more lately with doomsday talk and political rants and attacks. I asked him to lay off and he sent more. I sent some back, he got vicious and told me to "lighten up".

I felt unstable from receiving his vitriol which included visions of horror for my children and grandchildren. The fear of opening an email?! Forget it. Have not responded and he has not sent anything else. I started to imagine he was doing this because he knew I have dementia and enjoyed tormenting me. Thought I was paranoid, etc.

Better without the difficult people.

Have now gotten my world down to my dog and husband.

Do find a big smile will break through some situations when people are sizing me up - is she DD? Is she drunk or on drugs? Is she crazy? yesterday walking with my dog we went to top of hill which has a view toward Lake Superior 40 miles away. Two people were there, my dog went to get petted by them. I tried to make conversation but speech was slow and I was disheveled and they looked like they wanted to get back on their motorcycle to escape my presence.

So I offered to take their photo together.  one said yes, one said no. I smiled and they said "OK" and got a good one with huge clouds and forest behind them. I felt better, did not explain.

Done explaining.