I am planning to go to pool but keep remembering stuff I wanted to add to our Dementia Pioneer pool of ideas.

I just forgot it! Ha! ... OK, yes. Because of our emotional connections to our loved ones the experience of our confusion, frustration, anger, outbursts, crying spells, memory lapses, dangerous behaviors etc our Loved Ones are flummoxed in "how to help".

They are wounded by our words and emotions - maybe because they can not fix it? 

case in point: my daughter was HURT that I was upset over having to rush getting some legal papers sent and signed. My expressions of distress she took personally as her failure.

When I saw her tears I was crushed. She ended it by taking off her coat, putting her suitcase in the car (out of sight) and just sitting across from me looking at me with loving eyes. It took some moral effort to look back, but I did and then she held me. Wordless healing.

My husband's irritation is maybe because he wants to fix things and it does not help or work so he gets mad. When I saw it yesterday I thought "this is why having paid or volunteer help is important".

Although for some reason I am not in need of help today, in this light I think having someone come in to do the bathing and stuff is a good idea. Let my daughter be my daughter, let my husband be my Keeper, and let someone who is not emotionally wounded by what I may do or say carry that stuff.

Am I close to understanding this? 

however, in caring for my dad I did not take what he did or said personally but I think that is simply because I have always enjoyed taking care of wounded creatures and people. Not all of us love that role.

Also when some of us want to be free of the emotional responses to what we can not help and go to the few places for dementia people to go free range amongst people who like to work with dementia patients it is like a huge vacation. The village concept.

wish we were building those villages instead of war machinery!

alz+ posted:

just sitting across from me looking at me with loving eyes.

this takes me back and am crying

Probably the biggest regret I have is that I did not understand this....to busy fixing...not enough time connecting...I did not understand, not yet exposed to, the concept of validating, simple acknowledgement.

thank you for sharing this lovely moment

Beautifully put, Alz+....as you so often do. 

Yes....it be VERY hard I find bridge that gap between GCs and US...the actual people who dying.  

Obrien also put it very well, what I have been saying on here since I got here...."I" the one dying, not my CG. 

I found my most freest ability talk...express my feeling after be dx'd 2nd time (it REALLY happening me, I really going be die)....at my wellness group of people with critical illnesses that now included a number people stage 4 terminal cancer.  They did NOT trip over anything I said about be dx'd or how devastated I felt....or even my plans early exit.  All that was as matter of fact as if we were talking about the weather....and I was understood...and they had been there before, and I knew I would be ok.  That a validation that a TRUE validation, not a patronizing "I get you feeling bad" statement.  It was a HUGE comfort me in a great time need me.  I try be that for others who come on here newly dx'd...and try make it safe place them have their WHOLE range feelings that come with that.  

They have their own world going on over there across the board.  What going on for us completely different...I have used you advice and reduced my expectations that ANYONE will ever understand what we going through expect other people similarly dx'd.  I think they could have a lot learn us, however, if only they would be willing be willing listen us.  

But I can always tell those who have been dx'd terminal and those who haven't....because those who haven't they just don't get it.  It goes right over their heads.  Or makes them uncomfortable. 

And we don't mean be....like how your distress be rushed hurt you daughter, which crush you....but you distress in being rushed is REAL....and you ability educate you daughter re how care someone Alz is drawing a close....and the time you need her have already gotten it, is NOW.   I feel much same here.  I have been tell, say, say, write, write....but NOW I need the people my life KNOW and USE what I have been for months saying them. 

It very stressful STILL be have educate those my life....and it FRIGHTENING when those around me don't get it.  I would much rather be alone in the woods than with people who don't get it no matter how well meaning....because it hard exhausting take.

I have often said, that we can articulate our insights this disease at all....is a HUGE gift.  It beyond me that many still do no just simply listen our meager broken articulations insight...and recognize that our ability give words our insight what we going through a rare and precious and fleeting gift, that they real be missing something if they do no capitalize on it while they have it.  I sometimes wonder if any will regret that they no listened while they could my life....when I can no longer say?   I no sure.

I am MUCH less able talk now than was before, share what in my mind me be try say.  It sooo much harder me pull my thoughts gether form a cohesive thing say.  

Like you cared you dad, I care my mom because I see a need....and once seen, how can I not do what I can?  But, I agree you observation, that not everyone like that. 

I STILL believe that there a better care model us that better for us and for those that caring for us....and I STILL believe it possible bridge these 2 worlds.  And my brain STILL have try, despite its brokenness, because that where I stand....somewhere in the middle of the me who takes care my mom....and the me who have think about letting others take care me.  I have often been accused of being eternally optimistic...but I ok with that. 

There are just some things people cannot know unless they have been there, but I wonder how far we'd get if we started share....a line a song I love:  https://www.youtube.com/watch?v=hB7FNtnL6m8

<3

Alz+, I don't think you are at the point of needing a bather.  You have been under a great deal of stress, and it is cumulative.  When you were running around trying to get the paperwork taken care of, stress was building up.  You need to put into play your stress relief techniques.  You should have some quick-acting stress relief techniques that you can use in public, at a moment's notice.  

Also continue your regular stress control methods, such as the swimming and walking and communing with your new dog, among others.  I believe once you get back in balance, your self care will resume at a suitable level for yourself.

Iris L.

With all due respect, Iris.....she have Alz. 

It very hard no be in denial you self how bad things are getting in you life, when you have Alz...that one thing.   But it sooo extra extremely hard when you have combat you friend's and loved one's denial of how much you have progressed.

It can even be frightening because that lack understanding, we know, means we ALONE...very, very ALONE....with a broken brain, and inability do.  That inability understand where we at = lack of help support where we at.   As disease progress, we no longer have time for our loved one catch up, get it....we needed them be a step ahead us.

Those who think we more able than we are...are lost in their own personal emotion it (their own personal grief us)...and are NOT there helping.   So we left without help.  We no dead yet though...we still here.  

I very rarely get help bathe....so I often go without.   My workers think because I can talk with them, I must be able do tasks at same level I can talk....so I have EVERY DAMN DAY fight against this denial in others in my life...it a very tiring battle...try get help. 

That said, it VERY hard allow someone bathe you.  No one wrote the book on how make that ok inside...and it a much harder transition than switching for wear depends.   It mortifying, devastating, and deeply hurtful it have be...have someone touching do wash you body.  There no real way make that easy.  Yes, a distant professional that you do not have look in the face...and never see again...make it a bit easier tolerate have happen.  But, for me, I find my self esteem drops many notches in the process.  I try envision what a beautiful loving act it could be....

They PROMISED US that we would NOT be this aware at this point disease....it like a cruel joke that we are still VERY much aware. 

But I still grateful my gift articulate it, no matter how broken my ability is now.

<3

Sun, I am so on board with you saying that you would rather be alone in the woods rather than being with those that don't get it.  Sometimes I think it would be better that way.

--Lynda

Yes!  I'm in.  Esp if it includes Hawaii.  

<3

I'm finding most people don't get it.  It's hard I guess when they can't get in my head and "really" see or feel what I have to deal with.  I try to explain sometimes, but it's obvious most don't even really listen to what I am saying.  If I have to hear one more time from someone that, "oh, I do that too".  I am going to scream.  My new response to that is, " oh, you have dementia too?".  That usually puts a stop to it.   

It's not that I want sympathy.  I want someone to see me.  To see what is really happening here.  I feel like I am stumbling around in the dark and no one sees me.  I feel so alone inside this body.  I feel like I'm dying this slow death and everyone wants to walk around acting like everything is fine.  It's not fine!  Just tell me you see me.  Tell me you can see how hard I am struggling.  Tell me you know how scared I must be.  Tell me you will be here for me.  Stop acting like nothing is wrong!  

I have been compensating for a long time now and am finding it harder and harder to keep it up.  But I keep on.  What else can I do?  My husband one evening told me he could see how hard it was getting for me.  I said, "you can?"  He said I reminded him of a dolphin on the beach out of water flailing to get back in, but not knowing how.  That image really hit me.  That's exactly how I felt.  The fact that he saw what I was going through meant so much to me.  I cried when I told him that it was exactly how I felt and thanked him for really seeing me.  I don't know why that felt so good that he saw me and what I was going through.  I had felt so alone and invisible with all my struggling for some time.  It was just such a relief to not feel so alone or invisible anymore. 

Awww.....I just love that analogy you husband gave of dolphin out of sea.  <3

 Because we all need TRUE validation....not the fakey validation that often offered.  We need be able really talk about what we are really feeling and be heard and understood.  And we need this be a SAFE place do that. 

It part of basic humanhood....which often gets very denied us when we get dx'd dementia, by those who don't understand what it like be dx'd terminal.  That why I such a strong stand that this will be a SAFE PLACE. 

I suspect that much of what we have express post dx makes those who do not have access that new room of information we get access in....makes them uncomfortable.   Our intense fears and intense anger and our intense hurt.  But around others who have been similarly dx'd...this NORMAL.  Indeed, talk of dying NORMAL among those who are dx'd terminal. 

When we denied this space talk this.....when we forced take care the feelings of those around us.....we are removed from life....because we have this new room we living in and if we not allowed talk about it we like the only ones in room, ALONE, like a fish out of water.   BUT, when we allowed talk....and when someone understands....suddenly we no so ALONE anymore. 

<3

Others naturally want to help, make us feel good, fix, explain, find solutions etc and when they cannot do that they get frustrated. Maybe they shut down, feel powerless or give up? They want to make us happy so they can be happy. In a sense validating us means n admission on their part that they can't fix this for us.  They can't really get it and only can do their best to understand. 

I think I've come to the point that I don't expect to  be validated in the real world. It keeps me from getting disappointed. The spiritual side of me say's I should seek to understand and not to be understood. St. Francis. As long as I'm loved I think I can accept not being validated. Of course I'll get angry and pissed off when I set myself up to be disappointed by expecting too much from others. It's in our human nature to do so. 

----------------------

There a 13 yr old autistic kid in one my groups who just lost his mom a stroke the other day...I can no imagine what that must be like.  

There a youtube video Empathy that went around recently....

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

<3

Thanks Sun for getting what I was trying to say.  It is all about TRUE validation, not the fake stuff. 

 Llee, I get what you are trying to say.  My husband told me not to be upset with others who don't validate.  He said he thought that most of those people just don't know what to say or do.  It's not that they don't care.  He also reminded me that the old school way of handling things when people had problems, especially ones that can't be fixed is to look the other way so as not to embarrass the other person.  It's considered a kindness.  I don't care for that that much, but I do get it and am trying to not get frustrated and angry so easily.  I have a wise man in my corner, thank goodness.  Without him and my friends here I think I would be a mess right now.  

So thank you to him and to all my supporters on here. 

Love you all!

Really???  And I should know that since I grew up in a state that very big on look the other way.  And their "Nice" really mean smile you face be real judgmental behind you back. 

I guess I have completely forgotten ALL that.  Oy.  Alz. 

What it do make me think of....is when I see documentary about the Sudanese Lost Boys (God Grew Tired Of Us)....apparently they were being killed in Sudan and so all these boys, 10s of 1000s left....walking by selves....babies....try get Ethiopia where they turned away.   The USA took in 7000 them.   The movie followed some them their journey here.   One man in NYC he work at grocery store and man store throw old produce away back....Sudanese man made dump in dumpster.....but he gave homeless woman.  Got in trouble fired.  He say, he never understand this (I am like him...I do no understand this).  But, he say comment that stick with me....he comment about a woman in store who fall down crying....and everyone walk on right by her. He say, that how he know USA....he went over her, picked her up, comforted her (I am like that). 

Like at the 3:00 mark

https://www.youtube.com/watch?v=DYCA6g9bNg0

John was the guy who said comment, he was like a tribal leader many the boys....that just his nature....he always hurt, why him come America and not all the other boys:

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

I don't think I will ever be one look away when someone is hurting....or one see that as a kindness. 

But I thank you for the reminder this facet our culture....the autistic part me never understood our social code world, I had learn that very manually my whole life, and now that my brain dying I find that that what I am losing....all those things I learned.  Like, why people say they fine when they not....and how make that ok within myself. 

I have say, as I try re-learn what I had spent a lifetime learn....I cannot help but feel my life (that effort) was a waste...because what I do my heart try shut off caring, I don't like that much.  I wish I had resisted learn that more. 

I do think people this world are mostly caring....maybe no so much for me, but in general.  I still want be like John and be the person in the store who will pick up the lady who fell and care about her....and I seek make that be ok in the world. 

I believe in Rumi's we all just walking each other home. 

What a very interesting journey this morning this.

<3

One of the most haunting things my mother used to say to me as I would "drag" her out of the car on a cold night, lift her off the couch to go to bed, and make her sit down on the toilet before going to bed was "how would you like it if someone did this to you." In the abstract one can rationalize that I did all these things for her own good, but in reality it was how it made her feel that mattered.

On the other hand, after I tucked her into bed, gave her a kiss of the forehead, told her to have a good night sleep, she curled into bed, let out a sigh, and went to sleep.  

My advice is don't try to fix things that cannot be fixed, don't correct things that should not be corrected, give time for a person to do what needs to be done.

I liked the Llee's reference to St. Francis of Assisi.  I joke that I am a non-practicing, non-Catholic that goes to church every Sunday, but still St. Francis's words I never tire of hearing.

"Lord, make me an instrument of thy peace.
Where there is hatred, let me sow love;
Where there is injury, pardon;
Where there is doubt, faith;
Where there is despair, hope;
Where there is darkness, light;
Where there is sadness, joy.

O Divine Master, grant that I may not so much seek
To be consoled as to console,
To be understood as to understand,
To be loved as to love;
For it is in giving that we receive;
It is in pardoning that we are pardoned;
It is in dying to self that we are born to eternal life."

Very deep and very refreshing discussion on here this thread...LOVE IT...very thought provoking....it just exactly what I needed this morning (not that anyone would know that), thank you, thank you, thank you, thank you. 

But I do think there are levels of getting it....like there are levels of alone. 

It like racism...you cannot say that we all get racism....you might get things about racism, but until you a person of color, there are just some things about racism that you can't know....even if they tell you.   

But I DO like seeing the difference of Care Partner verses Caregiver finally showing up on this forum....blessings be!  That also a very refreshing change of scenery...at least for me. 

I probably not making any sense....and I am all out words for this day, explain or give context....but for all the reasons I cannot tell you at this moment - THANK YOU.  <3

Please try not misunderstand anything I said here this day.

Love Lane's quote...adding one...lady in video do not know, but it Mother Theresa.

https://www.youtube.com/watch?v=gOlN7ukQn3U

<3

a care-taker, a care-giver, a care-partner ...

A simple human, here.

A widow, now.

My immortal beloved died 3 years ago. He was 68/yo. He was a person who lived with symptoms of Alzheimer's dementia for 10+ yrs. One cold January morning, he suddenly died. In my arms. At home. A heart attack. I was hysterical. I was devastated. Guilt consumed my heart, my mind, my soul. Looping thoughts of:  If only I had done this or that. If I had known then what I know now. Thousands of could haves. Millions of would haves... "I did my best!" I would shout at the gods. But in my eyes, my best had not been good enough.. I was constantly sobbing. Crying. Whimpering. Begging for my immortal beloved's forgiveness.

But his voice was no-more. His presence was no-more. If he was no longer here-and-now to forgive me, I had to learn to forgive myself. Or go insane.

I began reading your postings. I've been listening to your voices for three years. Through the combinations of 26 letters I hear the sounds of your voice. I hear the echo of my beloved's voice. Frustrations. Anxieties. Disappointments. Anger. Fear. Instances of panic. Lots of efforts. Endless trying. Moments of joy. Smiles. Love. ... I hear through your voices his love for me. His acceptance of my shortcomings. His understanding. His big heart. My immortal beloved is my hero, indeed.

 I have begun the process of learning to forgive myself. A perfectly imperfect human being, I am. Forgiveness of the self; it might take me a lifetime. I am a slow learner.

When I was dwelling in the overwhelming darkness of my void, a good friend sent me the lyrics to a song written by Michael Smith in 1968, "The Dutchman". I heard the song performed by Celtic Thunder. Reflective gentleness. The song evoked feelings of unconditional love. Enduring love. Commitment. Above all, tender, loving,  care. For one another. The best of being human.... I am Margaret!

Yes, Sun, "We are all walking each other home."

I hear you.

Hugs and kisses.

w/e,  I think we all, those who are sick and those who care for us are doing the best we can.  Your post was heartbreaking and heartwarming.  I am so glad you found peace with your experience and did not go "insane".  I could easily see how one could.  My heart breaks for my husband, as it did for you, reading your post.  I understand that this must be killing him and on top of that he is trying to be the strong one, the rock.  Yes, we are both suffering and losing.  No one wins here.  But we both have and still are learning to love and forgive and be compassionate human beings through all the suffering.  Wouldn't wish this on anyone, but there are gifts in everything.  We just have to look for them.  

Yes, let's walk each other home as gently and lovingly as we can.  

Love to all.....

somewhere I read about "Alzheimer Altruism" in reference to a CGvr trying to get a refusing ALZ person to do something. They found that if they said it "would make _____ so happy if you would" the person would say, "OK" and comply.

when I have good days I try to make it possible for my husband to sleep late, nap, or make sure I get the dog out for a walk, esp a long run so she is willing to comply indoors for a few hours. Ha!

I was so enfolded into myself I could not consider how he feels. When my daughter just was so present and quiet and I could feel her remorse and her wish to help me, and not knowing how...Was good for me to remember how important it is to just shut up and be present.

Iris! I am not figuring on in home care for me yet, but my fear of it was always in the background. Fear has been intrinsic to my ALZ experience. When it comes up I shake inside, vibrate. So always good when I can let go of fear, and now fear of having someone take care of some of my personal needs - might not be for years, and who knows if I'll have a heart attack or whatever before that times comes.

I do remember discussing the why no party for us thing! My friend got brain cancer and her family and friends went to the islands for 2 weeks and they had an RV at the lake for a summer. I wanted someone to throw me a party like that before I become more withdrawn (if I ever do). 

Loved everything people shared - wow. Low expectations is so funny to say but it improved my life for free pretty fast. I used to be so disappointed at after church coffee that no one wanted to talk with me - had hurt feelings over and over. Then I quit expecting it and boom! better. Then in past year I set myself up a comfortable chair and table so I can be away from them chattering! ha!

sometimes I ask my husband, how do you want me to be? He seem peeved with  me. I thought he "shouldn't be". I should be excused for being peeved with him, I am the sick one damn it. It wasn't helpful. Now when I see him sighing or whatever I think, well now I can roll my eyes later and we'll be even.

I don't know. I am just so freaking glad to have had the chance to do my end of life relationship clean up. Every day something good happens. 

w/e beautiful

love you all. we can do this.

Alz+, I had never been a fearful person.  I was able to accomplish a great deal in my life, and I believe it was because I always would charge right in and do what came up next for me to do.  With CI, I have become hesitant.  I spent a lot of time figuring out why, and what to do about it.  Thank God for the members here,  for I learned so much.

As far as the party goes, when my Women's support group had a party, I internalized and personalized the party for myself, even though it was for the group.  I  got a lot of strokes from those parties.

Iris L.

~2010 I approached a geriatric care manager for help in handling my bills and other household chores.  I told her I was concerned that I might be developing Alzheimer's Disease.  She told me that the average life expectancy after diagnosis of AD was seven years.  That was a blow.  I didn't feel like I had only seven years left to live.  Guess what?  I have lived longer than the seven years I was given!  I'm still here!

Caregivers, family members, and professionals make all types of statements that may or may not be true.  But they don't have an understanding of how what they say affects us.  

Most of them have good intentions, but they are clueless.  I don't give a lot of credence to what they tell me now.  I filter everything I am told through what I have learned from the members of these message boards.  I believe these members are the most knowledgeable about dementia and caregiving, and I trust what they have to tell me.

There was a book years ago called "Everything I Know I Learned in Kindergarten."  I can say  (just about) "Everything I Know About Dementia I Learned on the Message Boards."

Iris L.

I think some caregivers have an Ah-ha moment and then they get it.  But it may take a while until they get to that point.  And even after they do, it can take a while until the caregiver and the care recipient mesh in what they are trying to do together.  There is a long learning curve.

Iris L.