Some of the horrific stories on the caregiver boards has made me terrified that before I die I am going to wipe my husband out of all his money, his health, his mind and any love or compassion he now has for me.  This is not the way I want to leave this world.  Destroying the ones I love and destroying the love that we have.

One caregiver spouse actually posted that she hated her husband and wished that he would die.  I thought that was bad, but then the other caregivers responded kindly to her saying that they knew how she felt.  Wow, what an eye opener that was.  

I knew things got bad with this illness, but I guess I never really thought it through how bad it would get for the person caring for you.  Who wants to leave a trail of destruction behind when they go?

Dear Blue Skies,

Please for now, just stay on our boards.

We think positive.  Get involved in Best Practices.

These days it might be possible to stay in EarlynStage for years.  Several of us long term posters call ourselves The Dementia Pioneers 

Try not to despair.  Some caregivers are dealing with very difficult situations such as potentially dangerous behavior (terrible hallucinations, aggression, etc.).  Their feelings under such circumstances are certainly understandable.

But this certainly is not the case for everyone.  In many other cases, it is regret that their loved one cannot recognize them, or cannot effectively communicate with them, or keeps repeating the same questions.  This is a matter of wanting to have the old person back and finding it difficult to adjust to who the person is.  The patience required and the stress induced is unbearable for some caregivers.  But despite diminished capabilities, a person with dementia still feels love, still needs love, and can still feel abandonment and frustration due to how those around them treat them.

This is a whole separate matter, but I am strangely happy that drug trials for this disease are failing one after another.  It gets us closer to recognizing the role of Best Practices and antioxidant treatments for Alzheimer's disease.  People say there are no effective treatments for Alzheimer's disease and all that you can hope to do is to try to prevent it. But that is only because they have taken the wrong approach to the disease in the first place.

I am so very sorry that the post was so disturbing for you. The words were hard to read but I think important for the poster to say and not have the sky fall. I do not think for one moment that her feeling were more than being totally overwhelmed and needed to have someone hear her.

My husband's illness destroyed nothing. I would  have given anything...everything gladly to be by his side day by day.  Illness was not something that was going to change our relationship. I loved him totally and beyond. He knew it. That said I was not always in top form. I could get impatient...I could get sad. I know there were days he felt horrible for being sick and I did not reassure but all in all there was a lot of bone deep love.

I bet anything that you are not going to "ruin' your husband's life. Illness will not destroy the love you have.

Sorry if this was sappy but I did want to reach out to you.

Edited: I would love for you to join us on spouses, Lorita's thread, where we talk about cows, children, cooking and everyday stuff. 

That was very nice of you to jump in and reply as a caregiver. I too read the post yesterday but decided to not fall into that mindset, although it will happen from time to time, and I think that's ok. You deal the best you can and thats why we're all here, to lean on and support each other, whatever the mood.  I think with any long term chronic illness with a "not so pretty outcome" as dementia or Alzheimer's, you're going to bounce back and forth in emotions and that's ok. Today I choose to be upbeat, the holidays are close, we have a new house and a beautiful grandbaby to celebrate. Our family is healthy, we don't have our acts together,  but we love each other very much and today that's all that matters to me. 

I had a conversation with my wife about the "future" and was just balling all over the place. My crazy idea was that when the time came, I would just go away, like ride off into the sunset to never be heard of again.  I would take care of all the " arrangements " so that no one would be burdened. In theory, it sounded pretty good. They'd all remember me as this vibrant, strong, independent woman and not the person I'm imagining I'll become. Do I want that? No, no one does, no one wants to go out that way and no one wants to see the person they love most in the world to go thru this. But it is what it is, it is the hand we are dealt and just as my wife told me, I do not have the right to decide for her. I would never walk away from her if the situation were reversed, nor would you walk away from your husband. I do have the right to say how I want to live, how I want the end to play out, but the bottom line is that it really won't be up to me. 

My wife has only worked with the elderly, she knows very well how this goes and will do what she thinks is best for me, as  your husband will do for you. I just started posting and haven't earned my wings like many of the pioneers nor do I even have an AD diagnosis yet, but I try not to think about all of that. As people have said, this is a slow disease and there's still a lot of life in between,  to live. Today I choose to enjoy life.

I totally understand how you feel, Blue Skies.  Unpleasant caregiver posts on our YOAD board have driven me away for months.  But I returned, because the positive support from my peers outweighs the negativity.

I have discovered that PWD and care partner perspectives are often opposites, not the same.  Since the dementia world is more geared towards the care partner, PWDs have to be extra cautious in not getting discouraged.  I regularly read both caregiver boards, but I am learning (still) not to take the posts personally.

Most of the caregivers who post such awful posts are uneducated and unprepared for dementia.  I post often about anosognosia, because so many introductory posts have to do with the new member's frustration with their LO's "denial."  They don't realize that their LO is not in denial and that they must learn new ways of communicating with their LO.  If a person thinks their LO is deliberately causing trouble, who wouldn't become frustrated and even angry?  They call their LO manipulative and other unpleasant things.  There was a recent post accusing the PWD of lying, without understanding the nature of confabulation, which several of us have exhibited as a part of our illness.  

I have been called bad things by my own friends, such as having a pity party, when I was merely describing what was happening with me.  In fact, most of my initial posts when I first joined this board was about my own sorrow over how my closest friends did not understand me nor seem to care.  I was in depression over losing my closest friends.  Even the psychologist did not understand.  I think she thought I was overreacting.

This is why I do not disclose about my memory and cognitive issues to anyone.  I can't afford to be treated badly.  But that's me.  Getting back to you.  As I said above, family members are uneducated and unprepared.  Many of them are in denial of what is happening right in front of them.  This is why I believe it is imperative for PWDs to educate and prepare ourselves for how we want our futures to play out.  It is up to us, who are Dementia Pioneers, to work with our chosen care partner on mutually acceptable plans, while we are able to contribute.  

I used to think that many posts were exaggerations, but now I believe that the difficulties are true, but I believe many of them can be avoided or minimized.  This is what Advance Planning is all about.   Many PWDs develop anosognosia, and thus cannot do much planning.  But we on this board do not have anosognosia, so we can plan for ourselves and our families or loved ones.  

I believe we should do what we can to remain as independent as possible, and thus require less care from others.  We need to reduce our stress so that we won't become "stressed out" and irritable.  We need to discover now what makes us satisfied and fulfilled in our lives.  And we need to communicate this to our care partner.  

Blue Skies, what I decided for myself is that I don't want to become a victim.  I don't want you to become a victim, either.  Please keep reading the YOAD board.  We teach each other how to live with dementia, and how not to become discouraged.  I hope those who are married will post how they communicate with their spouses. Alz+ has posted about her own relationship.  I am not married, so I cannot post much on this topic.  Years ago, I read a beautiful post from a woman who said her love for her husband grew each day, despite his having dementia.  I was inspired by her post.  

Living with dementia is rough, but we can learn to smooth out the rough places.  This is why I call us Dementia Pioneers.  We are learning as we go along.  We have this board to share with each other and to learn on.  I know we all can benefit.  I have.

                        {{{{{{{{ Blue Skies }}}}}}}}

Iris L.

One of the earlier topics I read on this board was about self-euthanasia.  That really threw me for a loop, because I wasn't thinking along those lines, nor did I think that others thought like that.  I was in bad shape every time that topic came up for a while.  Now, I don't let it devastate me.  In fact, I think that topic, along with other difficult topics, should be discussed.  We need to know what we are up against.  

But the problem is that sometimes the difficult topics are heaped upon us when we are most fragile.  I don't know a way to get around the difficult topics, other than to come around the hurting person and shower her with love and comfort and support.  That's what we need, and perhaps that's how the caregivers responded to their new member on the other board.  For many of us, members of these boards provide the ONLY support that we have.  Sad but true.

Iris L.

Blue Skies, Many of the caregivers who post here have a LO who is having extreme behavioral issues. Not all dementia patients do have extreme issues. For instance, when my mother was in an earlier stage I had a lot of angst as she was living alone and doing poorly, and refusing to go to AL; in addition, she was driving against medical advice and I knew she was not a safe driver. I took her keys away and I almost started WWIII with that action!

Now, I have gotten through those issues and my mom (stage 6) is calm, peaceful, docile, cooperative, kind.

I don't post much, other than to offer advice or encouragement to others. I have no need to post Mom's issues, as her issues are easily dealt with now. She has NO behavioral problems. 

Some PWD have a lot of behavioral issues. Some have few or none. Don't go down the path that you were led onto by the experience of one. 

Best wishes,

Beth

Yes,

The majority of Alzheimer's patients are said to go gently into the evening.

Caregivers educating themselves with understanding and techniques can smooth the path.

Education is power.

 JFOC  thanks for your words of wisdom.

And MIL words were beyond the pale.

I know some PWDs do have such thoughts, but they are their thoughts, not voiced by others.

Do stick with us.  From my local chapter I have worn out severaL braceleTs which bear the words: A REASON TO HOPE.

Always on my wrist.

Thanks to everyone of you for your kind words.  It really does help.  Seems I am on a bit of an emotional roller coaster ride lately.  I hope it ends soon.  

Iris, I have always been determined not to be a victim, especially with my past.  It was always a struggle to stay positive, but I did it and I am sure I can do it again.  Sometimes I forget and wallow a bit.  I guess to be expected once in awhile.  Thanks for reminding me.  

My husband is so funny.  He told me today that if I ever decide I can't go on we will go out like Thelma and Louise, together into the grand canyon.  Lol, he made me laugh.  He acted it out and everything.  I knew he was kidding and just trying to make me smile.  He is so sweet.  I teased him back and said you would probably jump out at the last minute and let me go alone.  He winked at me and said you never know.  I punched him on the arm and then we both just hugged and laughed.  He really is the best!  

And so are all of you!  Thanks again and love to all....

Blue Skies, to have someone that you can chuckle with over the quirks that we have, that's ideal.  You have a keeper!  Hang on to that guy!

Iris L.

This thread and some others have brought out some sad feelings in me.  I try hard to stay in good spirits but sometimes the monkey gets on me.  I'm taking a break for a while.

Iris L.

Sorry Iris  

Hope you feel better and come back soon.

Jean,

I wouldn't be surprised if euthansia hasn't filtered throughall our minds.  The book I'm Still Aice fiction and fast paced by Lisa Genova has it in.  The book, in my opinion, did a better job than the movie.

Some of us PWD have decided to go that route at the appropriate tie.

Like you, I'm still, at 88, leading a great life.  I write books on rural schools, read, am on here, enjoy a fantastic family.  End stage is a different matter, but I'll think about that tomorrow!

Have a relaxing weekend.

I'm sorry Mimi, if I may have offended you. I am learning thru all if this , I have come to the age that I realize and appreciate that knowledge is power. If I have been alive this long with my family's track record, then it's a pretty good guess I'll writher away at the end as some crazy wild demented old lady. I  am so much in love, why would I not want to spend all of my time left with the one I love? But I need to know what my options are so that I can feel that I am still in control of my life. That I call the shots. There is no way , after hearing my wife's point of view, would I ever destroy her soul by doing something like that. But I'm scared and I don't  want her to endure this, she deserves all the love and happiness that life offers, not to be taking care of me.

Thank you Mimi, for understanding.

Thank you for your introspective words, dayn2nite2.  I felt overwhelmed by the negativity and depressing statements.  Dementia is no picnic, but people can learn to accommodate and live a fulfilling life.  I truly believe this.  It doesn't have to be all misery, as it appears sometimes here.

I can't live down in the dumps.

Iris L.

isn't it wonderful how people come here an help each other heal?

most of the problems seem to be from the belief this is such a tragic illness which causes the dehumanization of the person. If the person becomes unable to respond quickly to questions or life, it is interpreted as some kind of walking dead.

just because this view is so prevalent  in our culture does not make it true.

it is exciting and horrifying that we who have the illness must be the pioneers who restate what our inner world is like.

this  is one place where it happens every day.

((Hugs)),

Yes, the CG boards are a shock and deeply hurtful for all of us (those who have progressive dementia)...and it almost is harder take than our own dx.  So take a deep breath and HEAL. 

In the end, it is (I feel) helpful information have...how they DO currently care for us (and just how off and whacked it is), and what they find hard.  Why?  Because WE still have some control over things.

I wrote a DETAILED Care Plan...based on the bs I read in the CG section...on how "I" want the various things that MAY happen, handled in MY life.  It was VERY empowering for me.  And I shared this with all the people my life...so it was educational for them as well.

For example, I KNOW that I get agitated because of unmet needs...and I know my greatest fear is be cold, and be drugged - like they do - rather than given a blanket.  Indeed, for weeks I could not sleep and had nightmares over this, something I read over there.  So I wrote, I NEVER want be given an anti-psychotic make THEIR life easier - I want my needs met, and I wrote educating them how do this for me. 

It CAN be a discussion opener for you and you husband. 

But yeah, you will have a LOT of healing need take place first.  You not alone in you shock and hurt. 

Also, there are a whole lot of people (not on here) with dementia who are advocating as we speak for us...and you might want look into Dementia Alliance International...they host weekly video support groups.   DAI is created by people with dementia, for people with dementia, and they the only org like them.  And there are other people like Michael and myself, who are actively changing the faces of what Young Onset TRULY looks like...and speak for what our needs really are.

Remember, YOU...YOU and your husband get write how this goes for you.  YOU ARE NOT BOUND THEIR BS...I promise you.  They are doing the best they can with what limited information they have...and many of them refuse educate themselves making it all the worse...YOU ARE NOT BOUND THAT...so take a few deep breathes.

Much love, sympathy, and support.

<3

I have had the belief for some time that some PWDs might be unwittingly provoked into their agitated behaviors due to the unsettled environments that they live in.  PWDs require evenness and consistency in their lives, which they don't often have.  Also, many medications for medical conditions may provoke behaviors.  PWDs don't have to live agitated lives.

Iris L.

I wasn't talking so much about interpersonal vibes.  I'm talking about the activity level of a normal household, with tv on all the time, pets running around, people in and out of the house, constant rapid changes in routine, and constant questions.  The PWD cannot keep up with these changes, which are imperceptible to the average adult.  To use an old analogy, the household is running on 78 rpms, and the PWD is running on 33 1/3 rpms.  The PWD can't keep up, and "short circuits" quickly and often.

My Sunday newspaper had a small article about common antibiotics, such as Cipro, causing hallucinations in adults.  Who knows if the upsetting behaviors that cgs complain about are not caused by side effects of common medications that PWDs are also taking?

Iris L.