How honest is right

Fred10462

My DW is fine most of the time. When she "goes south" meaning she starts to make up new facts for things she does not seem to remember, it gets tough. Then, in another moment, she will ask me "I'm getting better, don't you think?"  I've been honest with her about going in and out and the out part seems to be a little more often lately. 

She gets very upset about this and starts threatening a divorce. Of course, she forgets this conversation in no time at all.

I am wondering how others respond to questions from the spouse about how they are doing, when you know the answer will only upset them.

M1

Not to be flip Fred: I would lie through your teeth. This question is on the order of "does this dress make me look fat?" Only one right answer. Tell her what she wants to hear, it hurts no one but yourself to do otherwise.

Elshack

I totally agree that you should just say "You are doing fine and I am here to help you." This disease is depressing enough without taking the chance that she would have a moment of lucidity if you told her the truth that she in fact is not getting better. Honesty is NOT the best policy in this circumstance.

French

My partner sincerely thinks his memory will improve. He also thinks he would be able to live alone. Sometimes difficult to let him think that. I am like you reluctant to lies and I don’t know how to react.

JoseyWales

DH used to ask me if I thought he was getting worse when he was having good moments and knew what was happening. We used to have honest discussions... until he got worse and couldn't have those discussions any more. 

Now I lie. Always. I know it won't get better, he still has hope. He still wants me to teach him to drive and how to use his computer. He thinks he can learn those things. I lie and say I'll help him, but just wait because I'm in the middle of whatever. He forgets. I keep him from being upset.

CStrope

It seems like we all have specific situations that we continually have to bend the truth on. My DH also thinks that he is getting better.  He spends many hours each day copying words and definitions out of the dictionary.  I just commend him for his hard work and tell him he's doing great. Occasionally I'll try and engage him in conversation and ask "what word are you working on", but he doesn't really know the word, so he just responds with I'm working on my stuff.  

harshedbuzz

I think M1 nailed it.

Dad's situation was a little unique in that he had mixed dementia. He had Alzheimer's and WKS which is an alcohol related dementia caused by low Thiamine. He was diagnosed in around stage 5 in a psychotic episode which was treated with IV Thiamine and recovered a lot of his memory but not the working or short term needed to lay down new information. 

So, TL;DR, he did improve a lot and he remembered it as recovering memories overnight in his sleep. Because of the WKS many of these memories were heavily conflated (backfilling holes in a memory with random "facts"). He'd proudly announce some random recollection and we'd join in his happiness unless he'd gone to a dark place that could cause him harm or pain.

Jo C.

Hello Fred;  from experience, I understand how hard caregiving is; how hugely our lives and our pre-dementia future life expectations change and very much how difficult it can be regarding routine communications.

For all of us, there is a learning curve when dementia enters our lives. This truth issue is another of those lessons on that curve.  You have a healthy brain not affected by dementia.  Your wife no longer has the same capabilities in thinking that you have; she is at risk and must depend upon you for support, kindness and advocacy.  She is looking for affirmation that she is "okay." 

When she asks that question or a similar one, she is looking for comfort, support and validating that she is still, "okay" as she probably feels a difference or has been told she is now different.  That is very sad and unsettling for her.   As her advocate and carer, it is within your power to soothe her and bring her peace within the framework of her question. 

Lesson to be learned on the curve:  What is important in all of this is not blatant truth, but instead, a  loving kindness.   When you insist on telling hurtful truth knowing very well how upsetting it is to your wife who cannot protect herself, and what the outcome will be; you have created  an avoidable and personal hurt; you are making it about you and not about her.  In fact, knowing full well the outcome that this blatant truth telling brings to your wife can even make it seem a bit passive aggressive should this blatant truth telling behavior continue.

We learn that a "therapeutic fib," is not a moral lapse, it is a kindness to and for our Loved Ones (LOs).  It is also a good tool in the caregiving toolbox.   It soothes them, it prevents hurt and meltdowns and gets things done that otherwise would not be.  We do not react to their words but rather to the feelings behind their words.  This is a way that we validate their feelings.

Robert Brault quote:

“Today I bent the truth to be kind, and I have no regret, for I am far surer of what is kind than I am of what is true.”  

Time to let go and to do what is best for your wife when that question arises.  Please be a kind advocate and bring peace and comfort into the equation . . . I do like the approach Elshack has shared, "You are doing fine and I am here to help you." If she persists in asking more, simply tell her that she has been doing great; then immediately refocus her onto something else . . . . perhaps an announcement such as, "Guess what - Carol is going to have a baby," Or perhaps it is something outside the window, "Hey look at the red bird on the lawn, wonder what that is - come look."  OR "Hey, let's go get some coffee (or whatever) and cookies in the kitchen; I am hungry and need a treat."  OR, "Let's get the towels folded so I can put them away."  You get the idea - whatever distracts and refocuses her especially if she persists.

This may all feel a bit awkward the first time or two, but when you see the positive results of changing your own behavior, you will understand the kind and effective gift that "therapuetic fibbing" can bring and be more comfortable.

Let us know how it goes, we will be thinking of you and your wife.

J.

Ed1937

she will ask me "I'm getting better, don't you think?"  

If being a little dishonest bothers you, the answer is "I think you're doing just fine. Hey, how about a bowl of ice cream?".  And she probably is doing just fine considering where she is in the disease. Don't take away her hope.

HSW

It is difficult to hold your tongue. For me it was hard when my  DH believed that his parents gave him the house and garage. Like my paying off all his bills, putting 60k down, supporting him for the many years he was out of work and finally paying off all of our debt meant nothing. It took me awhile to understand how to cope. For me it was self preservation as he quickly went into a rage. 

Comfort, support, diversion and medicine turned it around for us. 

I always tell him we are looking out for him, will help him, its ok if he doesn't know. Consistent reassurance. 

I purchased clothes with lots of pockets so he can carry stuff around. Learned where he hid his stuff.

I moved out of the room down stairs while the floors were being installed. When our son moved into it temporarily I realized the noise not quickly identified caused him issues. I am still on the couch.

I don't say anything about the weird stuff he does, like putting all of his clothes in suitcases and filling his bureau with odds and ends.  I just bought new clothes and keep them out side his room. Who cares if he has coffee cup collection...

Lynne D

Our loved ones have lost so much, and have so little left. Let them have hope.

Fred10462

Thank you so much.

Jo C.

You are a good person trying to find his way in all of the jumble of changes.  You are on the right path and we are so glad to have you here talking with us.

Big basket of warmest thoughts being sent your way,

J.

Treading_water

I get this from my husband all the time. He will say “ I’m getting better don’t you think” or “ I’m really improving” while forgetting that he can’t remember his own address or tried to put a tide pod in the dishwasher. 

I think they are in a dementia bubble and from inside that bubble things look a certain way. Reality is muted. A lot of things are hazy. They think everything is ok because it’s their reality. They’ve forgotten what it was like outside of dementia. 

They don’t want the truth, they want reassurance. I suspect when they ask that question they got a glimpse outside the bubble and they are scared. They know enough to know something wrong but they want reassurance that it’s not so bad. So lie and agree…make them feel better and maybe optimistic for a while. 

Nothing good comes from being honest about this. It will just upset them and make them feel you are against them. 

Ipodd

My wife asked lots of questions denied she was ill at all sometimes wanted her mom whose been dead for decades now. I don't pretend to have all the answers here but I chose to be honest with her I was always honest in our lives together and I did not want that to change that it may have brought her some comfort short term to stretch the truth but I am glad I did not. I have plenty of regrets but now that she's passed the truth is not one of them.

Paris20

My husband continues to think he is fine (anasognosia) so he has never asked me if he’s better or OK. I do agree, however, that benevolent lying is the way to go. When my husband asks me where his car keys are, I make up a story every time and drive where we need to go. DH doesn’t realize that he hasn’t driven for over 18 months. He thinks he still checks his email every day…not true but I don’t tell him that. He continues to believe he still handles the finances. I withhold the truth. Let him think whatever makes him happy. As long as he’s calm and safe, I can think about the next story I’ll make up for him.

Karen E.

Truth

My whole life is based on truth telling

Not lying. Not hiding. Honesty above all.

When I did something wrong or hurtful

I confessed it. I never lied to my husband.

Never. Now, today, each day, I learn

To lie. Each evasion, distraction, fib, white

Lie or whopper costs me. Costs me.

But why tell truth when it doesn’t matter.

When it only hurts him and creates

Explanation after explanation that go

Nowhere until I finally give in and

Give the short answer he needs to be

Happy. I can waste our time

Being truthful and proud of it,

Or I can make him happy and lie.

I pay the price of truth of who I am

(Or who I was?)

Out of love. Out of love. Out of love.

Cynbar

Beautifully put, Karen. I'm going to remember that ---"I can be truthful and proud of it, or I can make him happy and lie." Sums it up.