Friday, April 18, 2014

Monday, April 20, 2009 Concerned daughter, Community Member, asks

Q: Do you tell someone that has dementia, that is what they have?

My father is in a memory care unit since he came out of his AAA surgery in Janurary. The care facility says not to tell him he has dementia or delirium as it will cause bad behaviors. He thinks he works there and they do let him move tables, help the maintenance guy etc. Well now he thinks he is getting transferred and has packed his things. Do we tell him why he is there? He was so big on honesty, I feel bad lying to him. Others there know they have dementia as he will ask them something like they are condo owners (like he is,ha) and they say, I don't work here and I don't own a condo, which is very confusing to him. Help. What is the right thing to say of why he can't be home with my mother?

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Answers (7)
Dorian Martin, Health Guide
4/21/09 12:43pm

Hi, Concerned Daughter,

 

In our case, I didn't tell Mom that she had Alzheimer's because it was her worst fear in the world and would have caused an emotional outburst. Plus, I would have had to repeat this bad news on a daily basis, which would have been a terrible thing to do to her. Instead when she was placed in a memory care unit and wanted out, I'd tell her that she was there because of her memory loss (which was true) and because of her need for skilled care due to her bad lungs. When she told me that her memory was just fine, I'd quietly ask her if she realized that I came to visit every day, would bring cookies, and that we would sit in a particular area. She looked shocked by the news, but said, "I guess my memory is worse than I thought it was." And yes, I had to repeat this same thing for several days straight. As her mental capacity diminished and she got used to the nursing home, she quit asking to go home.Also, at some point as the Alzheimer's progressed, Mom started thinking she was in a hotel or at her West Texas home.

 

Therefore, I'd suggest to you to be careful in what you tell your dad. My mom, too, valued honesty, but I also believe she would have had tremendous mental and emotional suffering if I had told her that she had Alzheimer's. Each case is different, but I'd suggest that kindness should trump blunt honesty for someone with advancing dementia.


Take care and keep us posted!

 

Dorian

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Angrydaughter, Community Member
5/23/09 7:04am

As I write this I am wondering if you still check this blog...Basically, my father has frontal temporal lobe dementia, and (though I didn't realize there is much of a differance) the scans show he also has traits that follow Alzheimers. To add further complication and heartbreak, he was also recently diagnosed with pancreatic cancer.  I'm not trying to bum you out, but your entry seemed to speak to me.  My father reacts similarly as your mother did in the hospital setting.

Is there any advice you can offer myself and my family? "Kindness should trump blunt honesty" may be the most wonderful thing I have read yet...At first we were reminding him daily what was going on which upset him because he has 6 siblings who had been diagnosed and ultimately passed from complications wit dementia. Now instead, we dance around the subject more and it doesn't seem to bother him. We put his mind at ease when he panics that he has to be in "court" or "work" by telling him we paid the fines, or you have retired and that calms him so quickly.  I HATE lying to him, but I think you are right...

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Dorian Martin, Health Guide
5/23/09 8:08am

Hi, Angry Daughter,

 

I'm so sorry about your father's medical condition. Those issues are so hard, but your father is lucky to have a family that cares for him and wants to do the best for him.

 

As far as your question, I think back to when I was caring for my mom, who had dementia and Chronic Obstructive Pulmonary Disease (which was the disease from which doctors said she would probably die and which did eventually claim her). I found that by identifying an intention (in my case, the word "cherish"), I could have a guidepost of how I would select my actions/reactions with Mom, her fellow residents, the nursing home, the medical community, my family, and myself.

 

I wrote about this process at: 

http://www.healthcentral.com/alzheimers/c/42/18386/year-adopt-annual

 

And the other thing that helped me a lot on the caregiving journey was to journal about what was happening. In my case, it was in writing shareposts for this site, but it could have been keeping a journal (whether paper/pen or in the computer). I also wrote about this at

http://www.healthcentral.com/alzheimers/c/42/35144/diary-beneficial

 

Take care and keep us posted on this site. You can post a question, your own sharepost, or even send a private message to me and other site participants. I know everyone is committee to sharing and helping each other navigate this difficult journey.

 

 

Dorian

 

 

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NC, Community Member
4/20/09 9:58am

It is very common that the professional caregivers would lie to the client or patient. One reason is that the patient does not admit that he/she has dementia of any type. Even if he/she knew when it is early Alzheimer's, the patient would not know it anymore later on as it gest worse.

My father-in-law has moderate AD. He has never admitted it. As an MD PhD, he studied the brain without seeing the patients in the clinic (he cannot practice in the US; he used to in Poland 45 years ago,) so he never even agreed to the doctor's test on his cognition level. He said in Nov 2006 that the doctor was wrong and that he would know! The thing is dementia patient is trapped in it that he would not know ever. He is 88.

He knows something is wrong with his brain and we have to tell him he is losing memory.

I can understand your concern that too much lying seems to be too much. Sometimes we also lie to my FIL who lives at home alone and has 24 hours caregivers.

Especially the home care nurse who is the home care boss also, she lies tremendously to him. She begins with talking to him the way he wants to talk about. In 2007 he was still kind of real, ever since 2008 and esp. this year, he no longer knows or remembers his career as emeritus professor and he forgot how to write and read. (He can sign and he understands words without abstract thinking.)

At times we would pretend he has a TA who is the night caregiver, and that the home care nurse is the lab manager...

To be honest, I was fed up with her lies so at times I told him the truth. But next day he would forget about it. This year he is agitated and if things don't go his way, he gets mad and fuzzy. One time I had to lie to him and say yes he is going to teach tomorrow (but not now late at night) and that I would buy the material to teach! Sometimes we have to lie to him to calm him down. None of us is trying to lie or be dishonest to him, but his mental state cannot bear the truth in reality, in which he has lost all the capabilities to live normally and he can no longer jog or drive and etc. The home care nurse lies to him saying she does not have dirver's license either to soothe him.

I myself don't like to lie too much so at times I try to tell him the truth or half truth. e.g., he does not notice he is living in his own house, so we tell him it is his house. In the future, we may not be able to do that because he get excited and upset when he is told it is his house. You see, since he does not notice it is his house, it  takes a lot of questions and effort for him to realize it is his house and since it is his house, he is anxious to know what happens to the house... (He thought he sold the house) and he would want to sell the house without any proper repairs!! (It is a very old house without proper remodeling.) So what do we do? Just let him think it is not his house unless he asks about it.

I can imagine in the memory care unit or nursing home, the professionals would lie to him to calm him down. I think the family, however, has the right to observe to tell the truth when it fits. It is up to the family to decide if you want to spend time explaining the whoe truth over and over again every so often. If you feel he should know certain truth without getting him too upset, I think you should be able to tell the truth. The professionals lie to the patient because they don't have time and they have the responsibility to keep the patient calm. The family is different and may be able to tell the truth sometimes. To be honest, in the end, my FIL lost so much memory that the truths don't work anymore. Sometimes we repeated so much that we gave up and stopped telling him the truth.

Sometimes my FIL had to pretend his house is his lab (he used to do research) and that all the caregivers are his lab workers in 2008. At the beginning I tried to correct this fact. It still works now if we tell him he is retired and etc. He is losing the ability to imagine the fake lab this year. Overall, some white lies are ok.

 

However there is line here that you don't the professionals to cross though.

For example, my FIL was lied to by the home care nurse so much that he once thought she was more important than my husband. My FIL actually wants her to be his girlfriend all the time although she is married. So we had to correct him and tell him we hired the home care nurse and he was able to recognize it. I told hm again and again that she is married. But once he thinks she is hired, he demanded her even more. My FIL just cannot live in a real world. It is either his brain or his mentality that he cannot accept he has Alzheimer's.

 

Hope this helps,

Nina

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NC, Community Member
4/20/09 10:00am

There is a line that you don't want the professional caregiver to cross over. e.g., My FIL's lady friend is able to tell him the truth that she is just a friend and nothing more. The home care boss keeps lying to him and didn't tell him the truth until much later. Also she woud also add to his fantasy by saying something about she would like to go to the moon also when he was talking about dying (he wanted to die this year when he realized he can not be normal at times.) She took the liberty to go too far about her lies. All we do is to undo her oversized lies.

 

Take care,

Nina

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Jane, Community Member
4/23/09 5:16pm

My husband is 65 yrs old and has cardio vascular dementia.  His neuropsychologist says not to lie to  him.  I sometimes do tell him that he has dementia or his eyes do not work together anymore (which is true)  when he wants to drive or something that is dangerous or if he asks me outright what is wrong.  He knows something is going on with him and he usually just says he is getting old.  He has many delusions and hallucinations, but sometimes knows or suspects they are not real like worms in the food once he examines it closely or snakes in the closet.  He wants so badly to be able to tell a story or be right about something.  So if he says a man came and stole his clothes, I say "Boy I would hate that!"  He sometimes looks around the house for someone he thinks he has seen walking around because he wants to talk to them.  If he says he is going to take a knife and cut the sliver out of his hand, I of course act very shocked.  When he wants to handle the money I tell him that sometimes he gets very confused and that is why I handle the money now.  He handled it for many years and now I will do it.  Of course he doesn't like this, but I don't argue about it.  I tell him that is just the way it is now.  I guess it is a situation by situation thing.  It is very hard to evaluate everything he says to know how to repond at that particular time.  

 

   

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Carol Bradley Bursack, Health Guide
3/11/10 8:01am

Jane, you aren't lying when you say "I would really hate that." You would!

 

I wonder about the doctor's advice not to" lie." What does he mean? Has he been in this situation?

 

 Yes, your husband has to know he can't drive or pay bills, and if someone important dies. But day to day we have to make judgment calls. There's no reason to bring on humiliation or unreasonable pain. I think you are very in tune and doing wonderfully. I know how hard it is - for an adult child anyway. I did that with my dad. It's likely even harder for a spouse.

 

Take care,

Carol

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halfmens@telkomsa.ne, Community Member
4/23/09 11:49pm

This is an extremely difficult question to answer, and its level of difficulty is reflected in the answers to your question that I have read.

 

Essentially I beleive that it is wrong to lie. Once you start down the road of well this lie is OK and that is not...then you are on a very slippery slope! I also detect in some of the answers hints of conflict that can arise between Care givers and family members, which can muddy the water even further. (In moments of lucidity the aptiemts awareness that they are being lied to, may exacerbate their confusion).

 

In essence everyone has the inaliable right to be told the truth

 

One cannot make hard and fast rules for ALZ sufferers but I would advocate not lying, ...This does not mean that you have to tell everything...sometimes silence or non-disclosure is appropriate. 

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coxcares, Community Member
4/30/09 7:49pm

Tell HIM!! You would want to know..Wouldn't you!?

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broketaxpayer, Community Member
3/10/10 2:40pm

Yes, but we don't have dementia.

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NC, Community Member
3/10/10 8:50pm

Try telling him and he may or may not understand. I think it is ok to tell but he would either ignore it or gets upset. Some elders deny it. Some acknowledge it at early stage, so it depends on the people.

 

Nina

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joelc, Community Member
7/29/09 12:24am

There is a concept called compassionate lying.  It is used to defer the truth to a loved one with Alzheimer's or other forms of dementia.  It can be used to explain the transfer to an Alzheimer's ward so that he will be able to accept the change at the moment.  My Father is being transferred to such a ward soon without his darling wife.  We told him that he is 'beating the path' for my Mother to follow.  While she will never follow him there, she does need assisted living herself but not in the Alzheimer's ward.  Hopefully, they will be able to continue to see each other on a semi-regular basis.

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By Concerned daughter, Community Member— Last Modified: 08/15/13, First Published: 04/20/09