Dementia will take from you everything you hold dear. It will take from you many friends and family members who will no understand an avoid you. It will even take from you those who do not avoid you, by shrouding them in their perpetual denial an grief an misunderstanding that you are still you. An all people, even those who love you dearly, will see you differently, even taking from you their image of you.

And people will not want to talk to you any more. Instead, they will ask those around you about you. And those who do still talk to you, will be put off by your language difficulties. Leaving you without support or friendship that you need now more than ever.

Dementia will take from you, your ability to talk with others. You will still be aware, you will still be thinking, feeling, wanting, needing…but it will take from you your ability to tell people in ways that they are willing to listen to.

Dementia will take from you your ability to know that you are in pain, or are hot or cold, or are hungry, or just simply need to pee. Replaced instead with what they call agitation, which is just the body’s hard wired response to remove itself from danger. Dementia will take from you the simple understanding of those around you, when agitated, rather than help warm you or feed you, they will medicate you to sedate this hard-wiring in you, with drugs that are not only not approved, but are black boxed warned against use in you. But what does it really matter anyways, you are dying anyways, right?!

Dementia will take from you all dignity and grace you ever had. Strangers will come, move too fast, strip your pants off, and wipe your butt…never once giving you the chance to understand what is going on.

Your own body will betray you in dementia…as organs an internal things can no longer figure out what they need to be doing. You can sit on toilet, but your muscles no longer understand how to make that all work.

And, in the end…dementia will even take your life. Nothing is spared, nothing is sacred to dementia. 

This was sad to read, but all so true. I watched this happen to my mother in law, and now its beginning with my husband. Everything you say is true. My FIL would say my MIL had "lost her dignity" and thats what would upset her so much. He loved that woman so much. He was 90 and she 87 when she died at home. He would take 2 hours to feed her, made a bed for himself next to her hospital bed in their living room, setting an alarm for every two hours so he could roll her over so she didn't get bed sores. He took her for car rides daily and wheelchair walks as well. Most of all he taught me to listen to her, to understand what she was saying even when she lost the ability to speak. I got to know when she had a UTI (which was common) and when something was just not right. He refused to have her drugged. learned she enjoyed me reading stories and playing music for her. When she was still speaking and telling the same story over and over and over again, I learned to just act like it was the first time I had heard it. I would see how upset she would get when her sons would get irritated with her and tell her she had already told them that story. Its a horrible disease and she would cry in the beginning stages and say she was getting just like her dad and asking how much time she had lost. An hour? A day? A week? Its patience we all need and understanding, that we too could be in this same situation. Believe me, it wasn't always easy, I was hit, pinched and growled at, but she would also hold my hand and lay her head on my shoulder. I was exhausted. I am exhausted right now. But I want to hear from those going through it and what they are feeling, so I can be the person my H needs. Because I find myself getting irritated and short with him, and I see how it affects him. its just plain difficult, isn't it?

Yes, an it be these two worlds I always seek try bridge.  I try write in way that some one like you can may be understand bit what is like us...why we do what we do...so may be you can bett figure how help us.  I think it take both our brains work gether on this...since I am getting past point of eve imagining how some one could help me.

I don't have an great advice...other than help support him in dealing with his dx.  An hep him live great life while still can.  I tell my workers, treat it like I lost both my legs...give me PT, an crutches...an celebrate my efforts walk.  Celebrate what I can still do.  An I say, there be plent time grieve me when I am gone, while here...just enjoy me. 

I generally appreciate finding humor in symptoms...an when peop crack jokes bout upside when I worsen.  I used crack jokes all time.  I still try, but now my speak is so bad...it no longer sound funny...an peop just get sad.  That be huge loss me. 

Peop concern me, pity me, sympathy...feels like open umbrella in be tween me them...preventing real connection...I hate it.  I am still here.  I long for peop see me an no see disease. I hate that disease get in be tween connection...like peop can onl see disease. 

Sadly, I find we retain awareness...an full range emotions.  I so surprised that I still have huge great insights...just lack all ability communicate them.  So peop take me as dumb. 

But, eve now...this all still can be beautiful journey too.  I don't have much ability write it an more...but I feel there is some thing very sacred about this disease.  I am glad it give me time.  I feel it be purification process...getting me ready go back home G-d. Things seem so much more beautiful me now.  Each day seems like most beautiful day eve...may be cuz forget past day? 

An ways, sorry you have be on this journey. Try see the good things too.  <3

Oh Sun, what beautiful words. What beautiful insights. Thank you for allowing us to walk this journey with you. I love how you say :Things seem so much more beautiful now. As my dear husband is asked to surrender more and more, what is left he sees with new eyes. Nature is ever more beautiful. And he lets me see things through his eyes now too.

This is the supportive place where we can all express ourselves freely and that is true here.   It is such a shock when the diagnosis is first made and it can induce very real fear in many who hear that applied to themselves or someone they love dearly.  I so remember what that was like.

This is one of those journeys in which each and every person's personal journey differs from the next person's.   In dementia, one size definitely does not fit all.  This is important for those Members who are newly diagnosed and new here, or who may be Lurking and reading here who have just received such a diagnosis to know.

While any of the aforementioned can be true; many person's do not have such a difficult and abrasive journey/care.

My step-dad had a 20 year journey with his Alzheimer's Disease.  Despite his memory being spotty, he never experienced the fearsome dynamics mentioned.  All the way to the end, he knew everyone, knew where he was and who he was, could feed and dress himself.  He showered with prompting, and enjoyed company.  He was very, very content and loved nothing better than to be in his recliner chair watching his favorite TV show, Bonanza.   His short term memory was quite spotty and he would not be able to tell you what he had for breakfast, but his long term memory was excellent.  He enjoyed visiting with family, friends and neighbors who came to visit him.  He was blessed with his quality of life which we worked to ensure and he passed away from a condition not connected to dementia.  Were there ever any challenges?  As with any medical condition; yes, but they were able to be addressed with good success with the quality of life being excellent.

My husband's mother and grandmother also had long journeys with their Alzheimer's Disease and they too were both were quite content and their journeys  thankfully did not bring them any of the tribulations that can be so difficult.  They knew everyone, loved visiting, fed themselves, bathed with assistance, and really had a good life despite the diagnosis and memory lapses.  For each of them, they too had memory issues with short term retention and MIL sometimes forgot details from long ago, but that did not matter as they each tended to live in the moment.  When each of them passed away years after diagnosis, it too was from something else other than dementia.  Their quality of life throughout was good and any challenges able to be managed. 

My mother had FTD; her journey was different.   She had a more difficult time as her disease advanced, and we had to keep one step ahead as much as possible to meet the challenges as they arose.  There is the very real possibility that she may have had a dementia induced psychosis from both the damage to certain parts of the brain, and secondary to personality she had prior to her dementia.   While she did not have all the effects mentioned; she did present significant challenges and it was an ongoing process to continue to keep her with as good a quality of life as we could.   She did pass away from her disease; and once past her mid-stages, all the behavioral issues she had been experiencing dropped away and she was peaceful without struggle or strife; for that I will be eternally grateful.  Her death was peaceful and I was blessed to be with her at that time and share my love.

Having excellent dementia specialists as part of the healthcare team was key to management and insuring quality of life.   With my mother, there was indeed the falling away of her friends and that was not so much the dementia diagnosis as it was her behaviors which could be astounding in their abrupt presentation.  Though it hurt me to see that happen, the friends could not deal with what they saw and thus, the change.  As it was; by that time, Mother did not deal well with noise or too much input, so she too was not actually tuned in to having friends in, but she was fine with family and she knew us all.

These are but a few examples of journeys within one family; everyone will have their own.

I am so sorry if you are feeling such dreadful challenges and concerns, and I so hope that your dementia expert(s) can help.  Also, the Alzheimer's Assn. has a Helpline that can be reached at (800) 272-3900.  If you do call for support; please ask for a Care Consultant.  Consultants are highly educated Social Workers who specialize in dementia.  They can be an excellent source of support, information, assist with problem solving and can provide contact referral numbers to helpful entities within the community.  There is no fee for this service.

May peace and solace find you soon and may you also receive unexpected blessings both large and small.  

J.

I accept what you say as being true for you and it may be true for others you have contact with either through the internet or through written word.

What I will not accept is your description of how life must have been for my husband. You simply can not speak for him.

"IF your husband liked having dementia".  What a hurtful, insensitive and outrageous thing to say.  I for one am out of here.  I cannot read any more numerous, lengthy, difficult to comprehend, self-centered rants bashing caregivers.  I am sorry you are sick.  I am sorry my husband is sick.  I am sorry for me too and I think other caregivers will understand that this is not exactly the retirement I hoped and saved for.  Over and out.

**This post was edited by the ALZConnected Moderator on 02/05/2016.**

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Hi Jen59,

I WILL keep writing...an we ARE still in there...eve if it may be hard tell that. 

We real do need out LOs more an more be our "back up brains"...to know what we be struggle with an add that piece of our brain we be missing, if that make sense?

I would love us be talk bout that frustration you feel him, an see if we can no find a bridge be tween these two worlds...because that what I feel be so missing, an so needed.  Call me hope full an optimistic, but I just sure that there be possible new care model that includes that understanding each other both sides. 

I can say it be hard work having disease...I have neve worked so hard in my life just do simple things...like lay out an take my meds...it is painstakingly hard.  I held on long time that task, I now in stage 6...but most give up that responsibility stage 5.   I made adaptations on adaptations...had signs an charts...still have them.  Eve now it still be on me do self...but needs no be, on me by self.  I make so many errors them...an I be type-a so is hard on me these mistakes.  I can no seem get point cross to workers though. I say clear as day, I need them check each time they come see if I be doing.  They made chart...they love their chart...an weeks go by...an STILL no one go back actual check.  They do no eve know what I take. 

What I would have liked, back in stage 5, when I was struggling hard this...an peop knew because was asking their help figure out plans this...was peop come see what I am be doing my meds.  Like this be how I lay them out.  An listen, this be what my struggle is them.  An then help figure out an adaptation or plan them...like, oh may be alarms on phone.  Like an add on my brain...make up for what my brain can no do. 

What normal be happ, when we start struggle meds...some one just takes over...an then we lose eve more skill.  Like when I be give up driving, I plummeted  into stage 6...an now struggle talk/write.  Now I could no drive if wanted to.  Hindsight always be 20/20 they say. 

Jen, I want to hug you! 

I feel the same about it. This association should be for the people with dementia to find support, and for us to seek knowledge. 

I always feel/felt like my mom is still in there, even if she's using more non verbal queues than actually speaking. I still am completely open and honest to her, and it's working out well, despite people's negativity and shock about it. My mother knows she has this disease and it's like a ticking time bomb. 

But we try to ignore that and instead focus on how to make her days bright. She smiles a lot so I think that amounts to something.

Anyway, I didn't see this post as malevolent in anyway, in fact just the opposite. Sun offers such insight and I hope she keeps speaking till the end, because her words can move mountains, thank you.

I read all of your posts and want you to know that I always learn something from them. Sometimes you talk about your situation and sometimes you generalize.

 In this thread your opening post was not written in the first person. It discussed what will happen to someone who has dementia not what can happen. Your generalization did include my husband.

Of course my husband did not want to be sick. He did not want to be dependent. He did not want to die but while he lived I believe that he knew that the people  he came in contact with loved and respected him.  No one treated him like he was not still important. Everyone gladly took the time to be "with him", to enjoy his company even if it were just sitting quietly  together.  

I spoke out because  I wanted go on the record as saying that not everyone's journey here is the same. 

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of course no eve one journey be same...that is inherent...an no needs pointing out.  So why can you no understand here, that this thread I post be bout MY journey an no bout yours???   

That said, what you may have experienced as loving care of us...is still humiliating for us...like that or no.  Nor do we want be taken care of, no matter how lovingly or kind that care is....an no matter how grateful we may ALSO be bout that care (because we can feel both ways same time too) - we still don't want have need for it.  An NO ONE OF US, want it take our lives...no matter how beautifully or spiritually we may deal with it.  That be, unfortunately, prett darn universal for peop this disease (except, of course, for those small select few weird peop that I am sure be out there some where). 

An as much as you may want speak for you husband, you don't speak for him eith. Onl he can speak for himself.  An I be prett certain, if he could speak...he would say, he wished he hadn't had disease eith...an that it took from him eve thing he held dear too.  An no amount you attack me going change that...that it also took from him eve thing he held dear...just like it is taking from me eve thing I hold dear...an just like it be taking all rest us PWD eve thing each they hold dear too.  No thing be sacred with dementia...it takes from each us, one way or other, eve thing we love...including our lives. 

That be how it be for PWD an ways. 

How it be for CGs is inherently diff, of course. It onl take from you CGs ONE of things you each love an hold dear - us.  Very diff boats.  Very diff experiences.  Very diff journeys...like that or no.

An you need learn how step back, an find way realize we be have very diff perspectives...from our very diff boats.  An you need be able do internal work on you self...same as we PWD need do when we come over wall CG sections (read bout how horrible we be care for, how horrible we are, how we get yelled at, things thrown at)...an find a way have AT LEAST gather an come with AS MUCH decorum when you come here PWD sections, as we PWD manage do in your sections.  It be very sad state of affairs when we PWD have more ability that than you without disease...an you need sit down think bout that. 

So thanks gain for taking from us PWD yet gain, making our section/threads be bout you...proving yet gain, clearly no thing be sacred in dementia (no eve our Association, no eve our sections this forum, no eve our threads or our writing...no thing, it will ALL be taken from us...whether from this disease,)  Oy vey.

**This post was edited by the ALZConnected Moderator on 02/05/2016.**

Awww Bill, that be just what I be try say...an I no get it eith.  It makes no sense...to me an way.  I hope WE, or at least I, make you feel welcome...I am so glad see you here...an that you stay. 

Unfortunate, this place just be like dysfunctional family...so much so that no one seems see just how messed up it be here.  An yes, there is much good here too. 

In end, no matter what an one say....end result is, there only be handful PWD here...an 100s CGs.  An PWD, disgusted here, started own organization in order provide support PWD, because this place was no going do it...there be 1000s PWD active online (just no here), and 100s in the video support groups (gain, just no here).  End result is...looks real bad Alzheimer's Association...like they no care help us.  An there be no thing an one can say do...improve an that.  No one seems listen reason.

Why I stay, I just be hard head, an huge heart...an am have more faith peop...than I prob should.  I hold out here, hoping maybe others also find strength endure CG antics an mistreatment...at an find strength in us who remain here.  But that prob be delusion my part...damn disease.  No, I be that way life too...so is me, no disease. Whateve.

An PWD here be kind weird, stand offish too...part that dysfunctional family thing...an they no see it eith, so no use point it out. 

So, if you can hang in there...you real be part family now too...an if no one else did, Welcome This Forum....we glad you here.  <3

Hey, Bill, I'm sorry if you felt unwelcome on the CG board.  I kind of felt unwelcome when I posted on your thread about banking and finances.  So, we're still in that particular boat together.

I personally have known some of the people on the EOAD board since I first arrived here.  I have problems in common with some of them and like to share my own experiences and solutions, or even just empathizing with Alz's construction problems.  I don't see why we all can't be cordial or even friendly, and just accept one another as human beings with diffdrent circumstances and challenges.

I would just like to say I appreciate any info good or scary I can get. Being a caregiver has its challenges as having dementia. I am not here to compare. All I know is my journey... My loving husband...my family. Any tidbit of help I get to make this trek easier I take. Any tidbit I find hurtful or maybe I don't understand I leave it. I feel welcome on all the boards. The long drawn out threads I sorta skim over. Again... Maybe a tidbit I just can't digest at that moment. 

Hugs to all. Keep strong. 

Michelle. 

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Thank you, Iris, for the vote of confidence. We are all people just traveling this journey. We may be in different lanes but we are all headed in the same direction, on the same road.

It's like traveling and stopping to ask for directions. Sometimes the directions are clear, other times not so much.

May we all just be open to giving and receiving directions. Peace.

Remember, we're all in the same boat; and the darn thing leaks!

Bob  

Bob, I know what I am talking about.  I have extensive experience as a physician caring for the ill and the gravely ill.  I have been a personal care partner for my Mom, and a distant caregiver for other family members.  I have had years of experience as a care recipient with several difficult to manage medical conditions, dealing with family care partners and professional caregivers.  And I have been on this board for seven years, learning from fellow patients and from wonderful caregivers.   

I find it odd that one person can come along and propose to speak for ALL patients.   No, that just doesn't make any sense.

I will not allow anyone to try to change what I know to be true about patients and caregivers, and the caregiving/care recipient experience.  Neither should you.

Iris L.

Iris L wrote:

I find it odd that one person can come along and propose to speak for ALL patients. No, that just doesn't make any sense...........I will not allow anyone to try to change what I know to be true about patients and caregivers, and the caregiving/care recipient experience. 

Thank you iris for speaking up. You are SO right. "That one person" DOES NOT speak for all PWD and never will.

Over the last 10 years, 5 members of my immediate family have been affected by dementia in its various forms and now my husband too. They each had their own unique story, course of disease and care needs, a learning curve for sure!

Hold fast to what you "know to be true" and keep speaking up.

Wow did I miss some excitement. I sure could see were this tread could have gone south. I do want to clarify there are some of us who are qualified to speak up for many with dementia. I made it a point to deal with all parties in order to better understand this disease so I can be a better advocate. While I can manly speak from my point of view much of it is also based on many with dementia as I had conformed much of it with others. I have also had the luxury to learn from many of the keep experts and be involved in many ground breaking projects that most here are not even aware of. And I can also guarantee you we are all different in some way when it comes to having some kind of dementia. That is why this disease is so hard to deal with. There is no cookie cutter approach. Don’t underestimate the valuable input from some of the people here. Do not expect perfection in there writhing as some have said above. I have no idea what that even means any more. I am just lucky to get any old words out. There is some good in al that is said her. Try to see that and let the rest go.

And people keep comparing us to Iris, We are far worse than that stage so one needs to take that into account. We are not the same and she also has a very different thought process because of her education and background which I truly appreciate. But don’t confuse that with us. You need to take the persons profession into what goes on her. That makes a big difference in the approach you see. 

To

The sun still rises,

I think what you wrote describes your experience 

In fact, would you permit me to paraphrase what you said when I do some writing to state and federal legislators?

Thank you

Bela

What can we do to help?

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Awww Bela, I would be so honored if it was be of use.  Thank you, an of course you can.  <3

Dear Sun Still Rises,

  I've only been on this site for two days, but you have taught me so much already! Even through your difficulty in writing, your heart comes through, your insights are so clear and easy to understand and appreciate. You are obviously a person with great wisdom and skill in communicating. Thank you for sharing it with us! 

Hi Sun-still-shines, 

Thank you for all your valuable insights into what it is like to be a sufferer of this disease.  It's really helped me to get some perspective and have insights into what my mother might be needing from me.  It's also put into perspective my grief - as you say - I'm not losing everything - although losing my Mother seems almost as if I'm losing everything as she's incredibly dear to me!  But I see what you mean, indeed - and thank you for that insight.  I really need to work out how to get some more perspective so I can go in to her and give her some energy, some humour, some perspective that life can still have beautiful moments - and to do that I need to pull myself out of this dreadful depression that has taken over me from seeing her suffer.  Your post has helped me to get some of that perspective - thank you for your insights - please keep posting!  With much respect.....  

I missed all this and was trying to go outside for late afternoon sun show.

We sure learn how each person hears and sees kind of what they are looking to find.

Sun has a similar view of her dementia as I do to mine. it is difficult, but not the most difficult thing I have ever experienced. I think what a person has already lived through shapes some of their disease experience, if I can call it that.

She wrote a beautiful piece at top of this thread about opening to the changes instead of resisting and hating them. It is a choice. She also said no one really wants to have cognitive problems, but sooner or later Mother Nature is going to teach us all humility.

Proper environment, suitable living situation is huge part of success in minimizing anger, fear and loneliness - at any stage of life!

Economics also affect how much stress there is in living with dementia.When we ask about the Ideal or express fears or anger over the lack of proper environment, it is not an attack on anyone, it is a request that those who take care of us learn to look with fresh eyes, listen with open ears.

Often what I am experiencing and what Keeper (my husband) thought I was experiencing are 2 wildly different things. This was true before dementia, true for most of us. We project, we interpret things according to our expectations. 

Loosen my grip, humble myself, explore the weirdness, learn patience, take it as a purification process going back to Creator in Nature. That is part of what helps me LIVE this conscious dying, time for contemplation and preparation.

Beautifully written piece by SUN. Love to all!

"There are decades where nothing happens and there are weeks where decades happen."

Dementia teaches us to appreciate and cherish what we have in the moment, thus living life to the fullest that we can manage.

It's arguable that sane people will just live humdrum lives til their end, whereas someone with dementia or caring for someone with dementia will try to maximize the time they have left.

It's a difficult and unfair journey but in the end, life is what we make of it.

I absolutely agree! 

There will always be those who do no see themselves as cause in the matter their lives...but those who know that they are, we will most definitely make the most of what we have. 

I am no sure why this old writing mine came up again...it do that from time time.  In this same section, I posted a thread titled, Blessings of Dementia, you may enjoy it. 

<3

Sun, please tell me what you wrote isn't true, although I know it is. I don't want to imagine myself like that, not ready to go there yet.Nor do I want to think of my loved ones traveling down this road with me. 

Happy thoughts today! I am not going crazy...even though I am going crazy!

I also wrote this:

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147523987

In fact, I think I wrote the blessings thread first...but was attacked because how dare I find anything good about it...so, in response, I wrote the nothing sacred thread. 

In many ways Dementia and Alzheimer's is BOTH....a mixed blessing. 

I mean no one likes be told they going die...but then we all going die, right?  So in a way, it NICE...really nice, in fact...know you going die ahead time....so you can make arrangements, see you friends, say what you have no been saying...make you relationships what you want.   It WONDERFUL me, have the chance (with the right perspective - that I feel knowing you going die give you) - LIVE....really LIVE in a way I would no have, if I still I thought I had a few more decades.  In any event, if beats by miles having an argument you loved ones leaving and dying a car accident no ever getting say sorry.

But Alzheimer's also take from me EVERYTHING I hold dear...my ability communicate.  I needed that save my life with doctors.  I needed that change the dementia care model so we'd have better care.  And, I really really wanted more time my granddaughter who amazingly very precious me....but no for me, for her I want the time....because she autistic, which mean the world going no be so nice her...and she only going have her mom love her when I gone.  What a nicer world her when she have me also love support her. 

BUT....because my brain go...I may not notice the world passing like those living in it do...but I see the leaves turn color, and slowly break free, and float the ground....I marvel at the amazing snowflakes as though I have never seen one before - they truly beautiful.  The richness and enjoyment my life because my brain bad - ten fold!

At the same time...I wear depends...robbing me my dignity....and yet, I less aware, making me no care so much. 

So it sort of a glorious mix of an amazing last chapter way spend one's life! 

In the end, my personal verdict is...it suck that I going die young....but it a marvelous, remarkable, enjoyable, amazing journey on the way my death.  And it can be for you also...just matters the perspective you take and live in...as there so many we can choose from. 

<3

By the by, I was attacked for this thread as well.  I think I was the first one on here express actual feelings about have this disease....and apparently, it was entirely unacceptable at the time.