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sudden changes, losing my grip, getting through it
Posted: Saturday, June 4, 2016 9:34 AM
Joined: 9/12/2013
Posts: 3608

Yesterday I had a strange experience. It felt like something fell off a wall inside my head.

When i was first diagnosed everything seemed pressured, intense, lots of fear. No one seemed to grieve with me - which was extra painful since no one ever has over my life time. Like I had turned into Useless.

This shift and clunk in my head felt physical, and was followed  by an incredible sadness, despair, and anger. I did my usual things to try to recover, wrote emails to a long time friend about despair, spent an hour on internet, tried to listen  to lectures on youtube...

I thought I was going back to staring at the holes in my underpants and trying to figure out the geometry of how to get a foot through the right hole. I got the oil out of fridge and took a gop. Within minutes I was hyper-aware of being hyper-distressed so I took a puff of purple kush. The tension did not go away as usual. I found some Orthodox readings and read them over and over until I got tired.

Just as I was falling asleep I realized I am overstimulated by "news" playing all day in house, the fighting and yelling and accusing on TV. Also being online brings more input that agitates me with the awful little ads and pop ups and noise, atrocious stories and my facebook "life" had become a place of tension from people and their comments combined with people who really reach my heart. The old dam of tears broke.

 I decided to allow the feelings to just come through.  I had watched a BBC video, about 4 minutes long, about a man who has volunteered to have his life with dementia captured 24/7 on cameras in his house. It was very moving, he said "have no fear, you can live with this". Then I read comments and one after another promised a future of living hell, one person said she and her brother decided "if we ever get told we have this we are going to kill ourselves." she went on as if she had an ocean of knowledge about ALZ, how awful life with demented grandmother was, a vacant eyed burden.

For first time ever I responded her and to some other people's comments about killing yourself, the waste of life, the empty shell stuff. I wanted to slap them all.

The feelings just rolled out ofme, remembering my mother's coldness and disapproval of my father's behavior, her shame, her fury with me for telling someone he had ALZ. How she and my brother treat me as if I am not worth helping - the lost cause, and even my sister (they are all very pro a certain candidate who name calls etc ) have shut me down for asking for a few things that would have given me peace of mind.

This is too long I know.

I guess the wall I built to protect me emotionally had crashed. I have feelings again, tears again. Before the oil ALZ had given me a kind of cocoon, insulation, thicker skin.

Letting myself cry all day if I need to. Letting go of toxic family, going back to Orthodox practices, choosing life, hope to get off tv and internet too.

thanks for being are all so important to me



Posted: Saturday, June 4, 2016 9:46 AM
Joined: 9/30/2015
Posts: 1155

I hope this does not mean getting away from here with all of us.. We will miss you like we miss Sun who has left a hole in our hearts.. I understand if this has to be the case for you too but you will be missed. I had to get rid of all the negative on my fb because it was harming me and my peace of mind. I hope you can calm the tv and find your peace inside your house. A house is a place where we are supposed to recharge and be ourselves and when it is not that it is tragic. Much love!
Mimi S.
Posted: Saturday, June 4, 2016 10:35 AM
Joined: 11/29/2011
Posts: 7027

Hi alz+,

Thank you for your thoughts.   We all react differently with the disease. On another post today, I wrote about Naomi Feil's theory of why some have so many behavioral issues when they have dementia. She feels that those folks have unresolved problems in their life. I'm not sure I agree although I highly recommend her Validation method.

And it does seem that are coming to terms with what yourself. You're good at figuring out what bothers your system and what you can do about it. 

I agree with you suicide after diagnosis. So many of us who have chosen to be Advocates have given so much hope to others so diagnosed and to their partners/caregivers.

Posted: Saturday, June 4, 2016 10:41 AM
Joined: 5/20/2014
Posts: 4408


The biggest hugs ever! The dam just has to break sometimes and let all the toxic waste out!

 Let the steam off and have a good go at it. Let nature take her course through the sensitivity of you're being and then take the weight of the world off of your shoulders. 

Walk Heidi but stop and find something beautiful to stare at. Sit and breathe...

Are you near an ocean where you can watch the power of the sea and get in touch with your powerlessness over the wrongs of the world? Stare up at mountain so high and mighty. Look at all which has nothing to do with the hand of man and know that you will get up again. That you always get up again! 

Stay off facebook for a while. Listen to the lyrics of this song.

This is an inspirational speech by Laz Buhrmann to a graduating class of 97. I hope you'll take the time to listen and think about what he says. It 

Love You To The Moon,


Posted: Saturday, June 4, 2016 11:12 AM
Joined: 12/2/2015
Posts: 1018

I frequently find myself thinking that I somehow can beat this Alz thing if I plan well enough and do all the right things. No sooner than I start thinking about these things than I do a turnaround and realize that there is no chance at all for anything better than a just a reasonably horrible slide into oblivion, with my wife suffering every little bad thing along the way. Me, I won't even realize it most of the time. But now I can think and reason and analyze, and I realize there really is no hope. Nobody seems to understand, and I think most people don't even want to try to understand. They are just happy it is me and not them. I have good friends, but I look at them over dinner or wine and realize that we are in totally different worlds. How long before I take a major step down, or just a slow slide down to the next level. Who knows. I can't seem to find real joy in anything, but I don't have great sadness either. I really just don't feel most of the time. It is like it is happening to someone else, not me. Alz+, you are needed by us Alz types here. Take time, but do stick around. I know I need you, and I'm sure many others do as well. Heck, I don't even know you, but your words have great significance to me, same for many others here. All we really have is each other and others like us who haven't found this place. I don't know what I need, but I figure coming here is the best place. I care not to listen to some PhD or MD tell me what it is like, what I should do, how I should handle something, or how to make the trip more enjoyable. They don't know nothing. I wish they did, but they don't. And most of them know they don't know nothing, and that pisses them off, but nowhere near as much as it pisses me off that the world can't seem to come up with a fix for Alz and dementia. Alz+, I think we  all have down days and nights, but we have to dig our way out somehow someway, and you always seem to have good ideas. Good luck to us all.
Posted: Saturday, June 4, 2016 11:37 AM
Joined: 1/28/2013
Posts: 2659

Alz, I feel like that frequently.  Too overstimulated, too much I have to do, etc.  I can suggest two things to help.  First, go to Youtube and search for guided meditations for relaxation.  They combine music with soothing images to get a person relaxed.  Second, if you have  a dvd player or something like it, watch an older comedy.  Laughter is very therapeutic.

Watching the news during an election year is not advised.  That goes even for me.  It's interesting that you mentioned something falling off a wall in your head.  The same thing will happen to me when my mother pushes me too far, except it's more like someone pulled out the rubber plug on my emotional fish tank and all my emotional strength flows out in a rush.  I'll say I can't do this anymore and have to go lie down.  Total apathy, no enthusiasm for anything.

Lane Simonian
Posted: Saturday, June 4, 2016 12:02 PM
Joined: 12/12/2011
Posts: 5159

Great awareness, too much stimulation, too much despair in the world--that is a harsh combination.  I have no great piece advice--maybe take a walk with Heidi in the woods.
Iris L.
Posted: Saturday, June 4, 2016 1:23 PM
Joined: 12/15/2011
Posts: 18513

Alz+, I have been feeling the same way.  In the past, I have always looked to reading the boards as a source of comfort.  But for the past year, they have been less a source of comfort, and more a source of distress.  Solution:  less time on the current board. 

 However, I do read the archives, which I still find uplifting and encouraging.  I feel uplifted to read posts of emeritus members, such as Alan in Colorado, SnowyLynne, and others.  Due to the setup, it is hard to find them, but they do pop up. 

I miss Alan especially, because he encouraged me to FIGHT.  He gave me this poem:

Do not go gentle into that good night,
Old age should burn and rave at close of day;

Rage, rage against the dying of the light.


I have added this poem to my personal treasure chest of inspirational sayings for me to live by.  I am fighting for my life.  I am not sitting around, waiting for the Grim Reaper, nor planning my exit.


The entire mindset re: dementia is negative, destructive, devastating and demoralizing.  I had members in my family who had some sort of dementia, but most were never formally diagnosed.  In those days, it was called "old-timer's disease."  It was just something that the family accepted, and they rolled with it.  The family did not become distressed, but made allowances and took care of the afflicted family member.  

Alz, when I read your stories about your dad, I feel so encouraged.  He sounds like my own older relatives with dementia--a bit slow and confused, but still the same person.

As for the news, I stopped watching the news years ago.  I hate the tone of the news--so much negativity.  Our culture has devolved into negativity.  "If it bleeds, it leads."  They are so nonchalant about tragedy and devastation and corruption.  Even our evening entertainment is about violence and devastation and corruption.  Who need this?

Keep reading your Orthodox readings.  There you will find uplift and peace.

Keep posting, because I use your posts for my own encouragement and uplift.  Do you re-read your own posts?  They can encourage you, as they encourage me.   

What I have found is that I must be more deliberate in seeking out positivity, in order to counteract the onslaught of negativity that tries to subsume me.  It's a work in progress.

Because of you, I spend more time with my own animals and in nature.  Don't underestimate your impact, Alz.

                                          {{{{{{{{ Alz+ }}}}}}}}

Iris L.

Posted: Saturday, June 4, 2016 4:25 PM
Joined: 9/12/2013
Posts: 3608

Thank all of you for being so smart and kind.

I did walk Heidi on wooded 1 mile dirt road and birds were singing away like a jungle. When I got back to house Keeper offered me a long massage and I took it like a champ! he worked the heck out of my sore legs, feeling more stable again..

I did not know about youtube guided meditation. Thanks for that tip!

Iris - did not realize you had relatives with dementia, your description of how people used to just fit into life seems so weird compared to how we have this global phobia about dementia!

Hi Bill - glad some of the stuff I share is of help, and no I do not re-read stuff I write here.

The way energy can be sucked out so fast! Yes, yes!

L lee - I am going to read or listen to the link you posted. I actually respond to your HUGS given in messages.

Most of the time things are rolling along, then a sudden reality check and kaboom. then the climb out of hole again. 

I agree Electronic Over-stimulation is as detrimental as noise, crowds, messy confusing places. The "news" was a habitual thing, have had tv off all day. We are making the house better a little each day, if it ever gets done...L lee reminded me a month ago to try to re-imagine the hoped for outcome which was really helpful.

Mimi - I have Naomi's book and for sure, some of us have old issues that are soothed by some understanding, no matter what condition our health.

Julie, Unforgiven, Lane - so helpful to connect with people who understand, deeply. I do not plan to stop coming here to visit, just cut back on internet, FB, and TV news.

love you all so much.  it is oddly wonderful people we will never see in person are more brother and sister than my own in real life. The swing between feeling pretty normal and the oil wearing off is big, we decided to do another dose before bed to prevent the shock.

suddenly I feel lucky again.


Jo C.
Posted: Tuesday, June 7, 2016 2:34 PM
Joined: 12/9/2011
Posts: 13599

Hello today dear Alz+; I hope you are feeling lighter than you were when you wrote this post.  You have been given some good input, but you know me . . . .

Here comes old Nursie J. riding in on her white horse; oh wait a minute, it's an old gray nag with wide haunches, sway back, crooked teeth and cock-eyed; clomping and gallumping; but it is doing it's best.

When there is an abrupt change in condition; yes, it might be the "downs" as in the up's and down's of dementia; however, it might also be something going on physically.

If you still do not feel up to snuff and things are still slipping sideways; remember that the body has a variety of systems and something could be askew in a physial manner.  NOTE:  Remember that you are at risk for those pesky UTIs and have had such and sometimes they are "silent" with no urinary symptoms.  So; if you are still feeling not where you usually are, you may want to check that out.

I hope you are feeling better and send warm thoughts and a warm hug your way,



Jo C.
Posted: Wednesday, June 8, 2016 10:35 AM
Joined: 12/9/2011
Posts: 13599