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Pros & Cons for telling patient of diagnosis?
Patny
Posted: Monday, March 7, 2016 9:46 PM
Joined: 3/7/2016
Posts: 4


I am very new to this world of alzheimers, and I'd like to hear from others farther down the road about your experiences deciding whether or not to tell someone they have Early Onset Alz.. If you told them, did they lose all hope? If you didn't, how did they handle not knowing what was wrong with them? 

If YOU have early onset, do you think it's better to know or not know? I would truly appreciate your input.  Thank you


a_step@a_time
Posted: Tuesday, March 8, 2016 1:37 AM
Joined: 11/21/2015
Posts: 237


Good question.

I would want to know but I am realist.  Been frustrated for 2.5 yrs but I seek antiviral. (All started post exposure/kiss, STD tests are negative).  Now I see benefits to not knowing... like getting finances and POA in order.  I am undiagnosed but assume dementia based on knowing what my parent went through.  She did not benefit from the standard meds so I guess diagnosis does not matter. I at least tried natural stuff like post herpetic diet and vitamins, with  some help. Also have dizziness, and vision problems like parent.  My personality seems to be changing now.

If I had no parent with it, I would like at least a clue.  Something to explain the brain madness.


BillBRNC
Posted: Tuesday, March 8, 2016 7:30 AM
Joined: 12/2/2015
Posts: 1018


While I can imagine situation where it might be better to keep the diagnosis away from the patient, I personally never do it. It wasn't an issue with me, as I knew before my wife did. But with my mom who had it many decades ago, I sat down and explained it to her, even though she didn't seem understand. I thought she had a right to know, and who was I to decide what she could and could not understand. Far into her journey, she developed cancer. She was fairly far gone by then. I still sat her down and spoke with her about the cancer and my feeling that she would be better off not treating the cancer. She agreed. Of course, she would have agreed to anything I wanted her agree to, but I deliberately worked hard at doing the best I could to make sure she understood what was going on and what we were thinking about doing, then making sure she at least said she agreed. I don't think she understood, but I believe being open with her over the course of her Alz got through to her at some level, and I thought she deserved having an opportunity to object or not. That just me. I don't think it is ever possible to truly know what someone does or does not understand, even if outwardly they don't seem to know. I want my wife to be totally open with me as my early onset moves on.
Michael Ellenbogen
Posted: Tuesday, March 8, 2016 7:43 AM
Joined: 11/30/2011
Posts: 4384


No one should never not be told. They have the right to know what is wrong with them. To many people think they know better. It’s how you handle it and what resource you provide that individual after they are diagnosed is the issue.  


The_Sun_Still_Rises
Posted: Tuesday, March 8, 2016 8:21 AM
Joined: 7/24/2015
Posts: 3020


I can no imagine why no tell some one. 

I was no told by my providers many years that they be suspected dementia.  I did no get diagnosed until just recently.  Now, I am forced have be struggle get my affairs in order an make wishes known when I am no longer able do it when my brain too bad be do this stuff...an, rather than enjoy these years.  I think that is hugely hurtful me...caused huge loss my life.  They be left me suffer wonder...with no Aricept...be cause they found too sad tell me.  I love them, but that ultimately was cruel cruel thing they did me...was no nice thing.  What eve they thought they be saved me...they real cost me.  What if I could have known 5 years go?  Aricept 5 years go?  Got affairs order when easy do...an had these years, knowing final years life, actually DO the things wanted do???  Now I can no travel...I can no see places wanted see be fore die.   

It is frightening be struggle each day with tasks.  At all times in back brain one is wondering *what hell is happ me...why can I no do this?!   No knowing just makes frightening be worse.  Knowing be give us reas why it be happ us.  I would be in shear state panic these days, if I did no have reas why I be struggle now.  It hard hard work each day me...onl save grace is I know why it be hard...I no have be fear it, wonder it...feel like doctors no care nough tell me. 

I can see no reas no tell some one.  But I also think a lot depend on how YOU see disease.  I think pers who tell us, should be confident us...be positive bout disease...be willing show us good in it...be stand for us, quality life with disease.  Other wise you just giving us all you negative with it as well...an that be burdensome.  I wish there was bett training for caregivers loved ones...it real hardship us disease that it no be in world at moment.  I can no imagine how hard is for caregivers no have real solid advice how be us, how tell us these things...but I have much love sympathy compassion this journey for caregivers.  <3

If you be had pain you gut each time you eat...should you doctor tell you you have stage 4 cancer stomach...or just let you keep wondering what hell be happ you stomach???  Which would be worse you?  Knowing...or no knowing??

I find no knowing worse of all.  Knowing a hard truth...allows us chance process it. 

One thing hugely missing in dementia care - is emotional support pers who just receive terminal diagnosis.  We support our caregivers...but we no real support pers process it.  We may no eve tell pers.  Or we tell them, but do no educate them on what disease process be...what they can expect.  Or we tell them, tell them get ready die. 

What we do no do, is tell them they be have diagnosis...this is what means...an you have many more years live well...that it be possible live well diagnosis.  Some times, eve out caregivers do no know we can live well aft diagnosis.  Some times our caregivers be stuck in grief...make us stick in grief as well.  Few think, may be time supportive services...like pers cancer diagnosis gets.  We oft do no get peop disease in support groups.  Oft times be cause our carers (whether doctors or loved ones) think we already lost gone, why bother.  If peop around us have already be give up on us...what hope we have stay happ through this??? 

Knowledge is power. I can see reas caregivers no want us have power over our lives futures.  Many caregivers, esp this board (no so much other internet places peop disease), want just come in take over do things their way...no want us have say.  Disease make us gullible, vulnerable this...an I feel we be need protection from this....as we always be peop first...peop who happ have disease second.

Largest barrier our care...I feel...is other peop.  I have be wait, without services, while others get through their denial.  I have work round others pity, sympathy, misinformation, fears...I would give any thing for those my life be as realist as I am, straight me...deal powerfully with reality.  This would allow me have best quality life can within what real for disease.  


Mimi S.
Posted: Tuesday, March 8, 2016 8:22 AM
Joined: 11/29/2011
Posts: 7027


Dear Patny,

I interpret your question as you, a lay person, telling someone else they have Alzheimer's.

If this is the case, then my answer is absolutely no. However, depending upon how the conversation goes, you can gently recommend testing. 

This is easier done if a situation arises in which the person, at the time, is obviously having a problem remembering or has acknowledged a problem. Be sure to say that there are cases when the diagnosis is other than dementia .

 And yes, being an advocate, I have suggested testing. Results are mixed. Sometimes they will go for testing and other times not. After two tries, I bite my tongue.

I know how much good resulted from my own early diagnosis and I want the same for others. 

However, I'm fighting against tradition, which is to bury one's head until the diagnosis is very apparent and the opportunity to be proactive in one's own care is mostly gone. 


BillBRNC
Posted: Tuesday, March 8, 2016 8:52 AM
Joined: 12/2/2015
Posts: 1018


Mimi, I agree that we need to take every bit of time we have to prepare, and knowing as soon as possible is important. That is why I don't care for that so many doctors prefer to say MCI even thought they feel that it is probably Alz. For me, it is my wife who has head buried in sand. She knows, but she won't believe and accept until she hears it multiple times from true experts. She is a doctor, so she should know better than most, a family doctor. My mom had Alz, so that might have something to do with it, since she has seen and felt in family what it means. Me, I want to do all I can do to prepare and hopefully help my situation while I still have the ability to think and put plans in place, or consult with my wife about the plans. I think this is vital important to helping to prolong the middle time where a person has significant Alz problems but still can have a somewhat independent and enjoyable life. For me, that turns on being able to live at home alone while my wife goes out of town to see grandkids or other things. I want to have the ability to do it, and I want her to feel reasonably comfortable doing it. So I look and look and think about things that can minimize the risks of being alone for a couple of days. I know everyone on caregiver page say safety it the most important issue. Not for me. Freedom and not being watched 24/7 is most important. I have always felt this way, even decades ago when my mom had Alz, so I thought about this a lot over the years, mostly many years ago. Now, it is me, and I think about it again, but this time I darn well intend to do whatever I can do help it out. I can still think outside the box on many things, and just because other Alz people haven't or don't do it doesn't mean I am not going to try it. If I fail, then I at least tried. By the not to far off, I won't be able to do this type of thinking or doing, so the sooner I can get my wife totally on the same page the sooner we can get all these things done, and the sooner I can set myself free to just take each day as it comes and enjoy just being here, regardless of the problems. Six years ago, they told me I would be dead soon unless I had heart transplant. Well, I'm still here and no transplant, and heart is decent enough now. It could go bad again in a second from now, but it also might not go bad for many years. I enjoy life, and knowing what you face that can stand in way is important to overcoming and enjoying life. With my mind at ease knowing I've done what I can while I still have a brain left, I can then just let life flow in whatever direction it takes me, with plans in place for when things get truly bad.
a_step@a_time
Posted: Wednesday, March 9, 2016 2:16 AM
Joined: 11/21/2015
Posts: 237


SSun, you have great points for a YES to know... like enjoying last vacations with family!!  Making financial plans for you and your family.  I am alone and don't have close family to help me (besides they have their own issues). 

 I saw somewhere about a Medicaid Annuity and hope I have enough brains to figure out something to last me a while since I don't know if I calculate my estimated life left of 5-7yrs on first symptoms or when the doctors TELL me diagnosis!!   Right now, I can't even tell if this annuity product is for spouse or patient.

I made mistake to go out this past weekend... all colds/flus make me worse and my brain fading fast this week.

I am still regretting getting angiogram in February.


Michael Ellenbogen
Posted: Wednesday, March 9, 2016 7:44 AM
Joined: 11/30/2011
Posts: 4384


 Based on the original comments on this thread its say patient. That implies to me that this person already has a diagnoses and one is wondering to let them know. If that is the case this is exactly the reason I keep saying Mimi should not be in opposition to make comments as a moderator. Her answer is very poor advice. If you were not a moderator I would not say a thing but people in your position should know what they are talking about if you are going to give advice. There is lot of bad advice on this site already. I look to folks like you to be right.  


llee08032
Posted: Wednesday, March 9, 2016 7:55 AM
Joined: 5/20/2014
Posts: 4408


Michael, I think Mimi is referring to someone not yet diagnosed but exhibiting symptoms?

I agree we deserve to be told. I think if the person has agnosia that both the Dr and the family together should tell the person. I think it is hard for someone who does not know much about dementia to explain and answer questions. It's important that the person has enough support and accurate information when the diagnosis is being disclosed.


Mimi S.
Posted: Wednesday, March 9, 2016 8:27 AM
Joined: 11/29/2011
Posts: 7027


Michael,

I went back and read both the original post and profile. Where do you find the word patient?


alz+
Posted: Wednesday, March 9, 2016 8:43 AM
Joined: 9/12/2013
Posts: 3608


If a person with dementia IS NOT AWARE they have problems, telling them they do won't make much difference.

My Dad had ALZ and even though I went with him and my Mom to doctor appointments I do not recall anyone telling him, "You do understand you have dementia?"

Because my mom had such an aversion to the illness and was overwhelmed by feelings of losing her social status, she certainly did not try to convince him. Looking back is hard to imagine this but it never came up. He die din 2000, had symptoms 12 years.

My point is some people are unaware of it, and telling those people will not make them aware as far as I know. Otherwise, if the person is seeking help for their world changing then getting a diagnosis puts a name to it and affords opportunity for last vacations, grieving, making amends, and adjusting.

Because my dad was unaware he wanted to keep driving, if explaining he had ALZ would have made a difference I am sure I would have tried.

 


Michael Ellenbogen
Posted: Wednesday, March 9, 2016 8:53 AM
Joined: 11/30/2011
Posts: 4384


In the title “

Pros & Cons for telling patient of diagnosis?

 “


Michael Ellenbogen
Posted: Wednesday, March 9, 2016 9:03 AM
Joined: 11/30/2011
Posts: 4384


I am sorry if I was hard on you Mimi but I get very frustrated with all of the poor information given out to help those who are really desperately and need it. I have high expectation that the people representing AA would correct people like myself and others when we are wrong so people have good information. While many people have said I could be a expert and survey on a panels such as this I would never do it as I know I could not get it right all the time. That in my opinion is what a moderator must do. I sometimes think its is crazy that some would call me a expert. That just goes to show you how there rest needs so much more awareness.

 


jfkoc
Posted: Wednesday, March 9, 2016 10:17 AM
Joined: 12/4/2011
Posts: 21127


One answer fits all?I hope not because I never told my husband that he had dementia of any kind. It would have been counter productive and yes, I was the one who determined that. 

I based my decision on  how he responded to illness during the 40+ year I knew him. He did know that he had Parkinson's and as it progressed that it had an effect on his memory. 

If my husband had been diagnosed with Alzheimer's Disease and had he asked if he had it I would have told him that that was his diagnosis.

 


The_Sun_Still_Rises
Posted: Wednesday, March 9, 2016 10:42 AM
Joined: 7/24/2015
Posts: 3020


I know many caregivers feel it be their right prerogative no tell us...an I can see understand situates where it be easier on caregiver no tell us.  But in end, question be...do we have RIGHT know this information self???

Would it have made diff an one who did no tell...if diagnosis be cancer?  Some peop no be told their cancer diagnosis eith...like when ver elderly at end of life an ways.  BUT...gain, did they have RIGHT know this???

An I think that be big question...an one where caregivers goin feel ver diff than peop with disease. 

Or other situate...my daughter had dyslexia...an we be had do special things be cause of.  Do you tell 3 or 4 year old that or no?  I chose tell her, be cause one day she goin have manage it her self.  It might have be FEEL like nice compassionate thing me no tell her...but truth is, she have right know why we doing some thing diff her. 

So it hard issue...one each pers will have navigate best they can. 

I think we need be consider it be posted under young onset section...likely be get opinion peop young onset...just thinking.  Which goin be diff than caregiver opinion...just saying.  I also read some one already diagnosed...caregiver trying decide whether tell. 

May be best answer be...it all depends on dynamic.  ???

PS...I see Mimi as have valid opinion this...but agree should no come under AA auspices, unless this AA opinion as well. <3  


Michael Ellenbogen
Posted: Wednesday, March 9, 2016 10:44 AM
Joined: 11/30/2011
Posts: 4384


I really hate people who think they know what is better for others and tell us what we should do, think or feel. We should leave it to the person affected to figure it out. Again I am referring to those in the early stages of having it. People should stop playing god. I know to many who knew they had a issues and it was not till others pointed out to them that they actually did something about it. Some chose to stay in denial and I guess that is okay if they want to be that way. Their choice.  Many moved on and did great things to help themselves and enjoy life in much better ways because they were finally confronted with what they always thought of. And then you have those who seeked help and what they had was completely reversible and not dementia.

 


Patny
Posted: Wednesday, March 9, 2016 11:19 AM
Joined: 3/7/2016
Posts: 4


I want to thank you all for your very relevant and well thought out responses to my question. To clarify, my relative has been tested with the result being Early Onset Alz.. She has a doctor appt. soon to get the results. (Husband found out results already). 

She will totally understand the ramifications of the disease; his concern about telling her, I think, is that she would lose all hope of recovery and give up. He asked my opinion, so I turned to you. I can see the importance of respecting her, and allowing her to participate in planning her care and future while she still can. Thank you all for your good advice, I will pass it on to him! 


Unforgiven
Posted: Wednesday, March 9, 2016 12:40 PM
Joined: 1/28/2013
Posts: 2659


I'm with Michael.  It's better to know the truth, no matter how disturbing.  Imagine being familiar with the symptoms of EOAD, ha ing them, and not being given an explanation.  I would think that the person in question is going through a lot of fear right now.

Is it giving up to know the truth and using the good time you have left ahead to do all those things you were putting off until your Golden Years?  Hell no.  With information one can plan ahead and be in control.


alz+
Posted: Wednesday, March 9, 2016 2:15 PM
Joined: 9/12/2013
Posts: 3608


PatNY -

it is true some people go through a period of adjustment when they feel all hope is lost.

this is in large part because they assume ALZ = slide into nothingness. that is a commonly held  belief which sets in motion despair, depression, hopelessness, and panic.

the truth is that the diagnosed person's life does change, does become more difficult but not being able to recall as quickly as before a name or a word does not mean we do not know who the person is, or what we are thinking.

Please help them learn the truth about Alzheimer's and set course for a journey of extraordinary moments, fun, closeness, appreciation, and deepening love and increasing courage.

The person will travel better with a lighter load.

wishing all of you the best...let us know how it goes.


BillBRNC
Posted: Wednesday, March 9, 2016 3:37 PM
Joined: 12/2/2015
Posts: 1018


alz+, you are so right. I wrote a great rant, but somehow it got deleted, and I don't want to try to redo it. I don't know how so many people got the idea that life is over when you get diagnosed with early onset Alz. It ain't over till it is over, as the fat lady said. Everyone wants to talk about how sad it is for the caregivers giving up their lives for us. It doesn't have to be that way. Just let us live until we can't live, then let us die for gosh sakes. I don't care if I don't remember what I did yesterday, or can't plan for next week, or all the other stuff. Just help me craft my new world so I can live in it best. Don't worry about my absolute safety, but help me to live. Everything in life is a risk. When a person has little nothing to lose, then that is when you take the biggest risks. I don't want my wife keeping me in a jar on the shelf so I stay safe. Let me live. I'll take the chance of something bad happening, but I want the chance to have something good happening more. Life is NOT over when you get diagnosed. It is only over if everyone around you treats you as if you are already dead. There are plenty of things worse than having Alz. I can think of dozens of them. Heck, I've already had a great life. There are meny people who have never had any life but misery. I want to make the best of this terrible situation. It is a challenge to me. If it works out, great. If it doesn't, that is the way the world turns sometimes, but I still would have had a one heck of a good life. I sure don't want to end it drooling in a wheelchair or having people watch me like I am about to jump off a building. Let me get lost while out for a walk. Big deal. Let me have close calls. Big deal. If I get myself killed, big deal. At least I will have taken a shot at life. End of rant for today. You are so so so right alz+.
Mimi S.
Posted: Wednesday, March 9, 2016 3:48 PM
Joined: 11/29/2011
Posts: 7027


Mea Culpa, Michael,

 Indeed you are correct. The word patient is in the title.

 

What happened to the original posts on this thread? They have disappeared.  I can't go back and reread my original post. When I did so this morning, I saw nothing inappropriate about my answer. It was however, evident from other's responses that they took the meaning of the question to be different from the way I took it.
 I was wondering if the original poster ever clarified the meaning of her question. And on rereading I found the answer there. I would certainly want her to be told. And further told that yes, right now there no cure but there so much that a proactive person can do to slow down the progression of the disease. 

 

Many of us on these boards, who were given our diagnoses years ago, have accomplished much since that time. We were given time to get our affairs in order and are living life to it's fullest. 

The earlier the diagnosis, the better. I do hope the wife will join us on these boards.

And actually, you and I think alike on the matter of a doctor disclosing a diagnosis.

Iris L.
Posted: Wednesday, March 9, 2016 5:17 PM
Joined: 12/15/2011
Posts: 18354


The original post was vague.  The answer does depend upon many variables.  The OP wants to know if knowing the diagnosis will cause the patient to lose all hope.  The standard response for many newly diagnosed patients today might be to lose all hope.  This is the prevailing sentiment, even espoused by doctors and other professionals.  The patient can't win if everyone around is morose.

I feel into a deep depression at one point.  The only thing that got me out of the deep depression was reading the posts from the members on the old board.  I came to the determination that, if I did have dementia, I was not going out like a victim.  I would FIGHT for my life!  

I don't see how a patient without access to inspirational patients with dementia can prevail.  The outside world is just too depressing.  Even if you read some of the caregiver posts, there is a fatalistic tone.  I find it personally demoralizing, and I must continually encourage myself to fight back against it.

Many patients do have anosognosia, and will not believe that they have dementia.  They need to be approached in a certain way.  Other patients without anosognosia may believe that they have dementia, but they still should be approached in a certain way.    Is the patient seeking information?  The best thing is for the patient to come here for support and encouragement.


Iris L.


Iris L.
Posted: Wednesday, March 9, 2016 5:53 PM
Joined: 12/15/2011
Posts: 18354


Michael, I don't believe Mimi's response was inappropriate.  She interpreted the question to mean, should a random person tell someone she has a problem?  The original post was vague.  Mimi stated, the questioner could gently take the person aside and alert her to some concerns.  Mimi's response was generalized.  I think she did the best she could with the original post.


Mimi is one of  our most fervent supporters and encouragers.  I have learned so much from her.  I would not be where I am today without her.  All of us have opinions.  This is not a board moderated by professionals.  We express opinions.   I don't see a problem here.  This is my opinion.


Iris L.


The_Sun_Still_Rises
Posted: Thursday, March 10, 2016 4:34 PM
Joined: 7/24/2015
Posts: 3020


Patny wrote:

She will totally understand the ramifications of the disease; his concern about telling her, I think, is that she would lose all hope of recovery and give up.

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

I pers think it beautiful you ask us.  An I agree Alz+...we all are hit hard with this diagnosis...but so would we be if dx was cancer stage 4.  If she was told cancer...would she give up all hope recovery? 

An...in way - there is no recovery.  We all have give up that false idea at some point.

What there is no (yet) in dementia care...unfortunately...is ways means methods support us emotionally help us be come terms with horrible terminal diagnosis. 

It going hurt her.  Some times life be hurt us.  BE there for her...tell him that may be.  Support her same way you would if this was cancer.  BE her side.  Fight it with her.  It no get take an one us without a fight.  Help us fight it. 

I do strongly recommend get her therapy...allow her process what this means. 

Be patient her.  She going get sad while.  She going say things...like take her out shoot her now.  Let her go through the grieving process...same as you would, same as an one would with diagnosis.  THEN...

Then...then help her pick up pieces. Help her see that that there is still much life after diagnosis.  Help her find things enjoy gain.  Help her stay active her life...doing what she always did.  Write things off like...when we have change we will, until then...no reas no still do what we do.  Hug her.  Love her. 

Allow her room space come terms this...help her rebuild life.  We each do this our own ways. 

KNOW (you, he) that we are real suseptable you feelings...you need be confident we will be ok.  If you down, we will sink...if you stay sad, we will neve get up gain. 

Get her involved support groups pwd...she will see we all be live well with diagnosis.  Life no over yet us. 

An most import...just love her.  Come closer.  Spend time her.  Get know bett her.  BE there her. Eve if disease bad...it good family come closer.  <3

Hope that help.  Best luck you he this...an her.  Hope you will let us know how goes. 

<3



Patny
Posted: Thursday, March 10, 2016 8:47 PM
Joined: 3/7/2016
Posts: 4


Thanks so much, Sun Still Rises. And I love that screen name, it's so full of hope, and determination to make the best of each and every day!

I'm thankful that I found this site, and all of you, and pray my family will come here, too. 


alz+
Posted: Friday, March 11, 2016 2:53 PM
Joined: 9/12/2013
Posts: 3608


when I first read the original question it never occurred to me this might be about telling some one we know casually that they have symptoms.

However, days later, it triggered a memory. My husband and I were on vacation in the desert and had car problems. we went to a mechanic in a town 20 miles from where we stayed and needed a way to get back. went to a rental car place and it was packed, noisy, and the young people at counter were very fast talkers.

I could not answer their questions. I felt myself shrinking, thought maybe it was a panic attack, and sat down. I could not speak. A woman came up to me and asked if I needed help. I was just frozen. My husband spoke to her and she offered us a ride back to our rental. 

On the way she asked my husband how "long has your wife had Alzheimer's?" I was in back seat with my dog sitting on my lap and pressing into me which she did when I "got nervous".

The woman even left him her phone number if we needed any other help. Her husband had recently died of ALZ and she told him how my eyes reminded her of him.

This shocked us both, but I think it was 6 months later I was diagnosed. I am glad she did speak up, it got me off the psychiatric treadmill. 


Unforgiven
Posted: Friday, March 11, 2016 3:21 PM
Joined: 1/28/2013
Posts: 2659


Oh my, that must have been a shocking way to learn of it, Alz.  Some would call it cruel or tactless, but it's still worse to be in doubt about why you felt the way you felt.  

Every person has a moment of hopelessness after getting bad news, but then the human psyche learns to accept and deal with the challenges of the present and the future, which may not even come to pass in  the long run.

Stephen King, writing about horror tells us that if we want to really scare people, we never show them the alien bug outside the door.  If we open the door and see the fifteen foot bug standing there, then we think, "Only fifteen feet tall?  I can deal with that.  A twenty-five foot, on the other hand, that would scare me."  No it doesn't.  You can make the bug 500 feet tall and the readers or viewers will still find a way of dismissing it.  It's the undefined horror that scares us the most.

If a person can understand the concept if a bug outside the door, they have the right to know how tall that bug might potentially be, even worst case scenario.