If that link doesn't get you there, then go to the New York Times website and click on the "Health" section. The article, "Love and Burnout: Caregivers, Too, Need Care," was published on 9/2/2016.
Thanks for the link. It's a solid, informative article. I recently came across an older article by Mark Johnson in the Wisconsin Journal Sentinel, "Loneliness hits seniors whose spouses are still around but have Alzheimer's," which is also worth reading:
I asked a question of The Ethicist in the New York Times Magazine (http://www.nytimes.com/2016/09/11/magazine/what-should-i-do-with-my-dead-husbands-journals.html). I'll copy my question and the answer here.
Q: "My wife has dementia. When she wakes up in the morning I generally tell her where she is and who I am; sometimes I have to remind her what her own name is. It’s hard to tell how much she understands of the world around her. A while ago, her mother, who lived in another state, fell ill and was taken to the hospital. I told my wife what had happened. Later, her mother died, and I decided I should tell her. She may have understood. This was a difficult decision, and I spent hours wondering whether I should do it.
"What does a person have a right to know? Is the answer different if the knowledge will cause a person pain, and they’ll very likely forget afterward? What good comes of that? Now I’m thinking that kindness trumps telling the truth, even for the most serious matters, but I don’t know if I’m on a slippery slope."
A: "There are those who think that the point of truth-telling is to preserve their own moral purity. But the really compelling reason to volunteer a truth is so that other people have, and can act on, a proper understanding of the world. Other things being equal, we’re better off when we know how things really are. If telling the truth has no chance of achieving this end, I don’t see the point of it.
"The issue in this case isn’t your wife’s right to know; it’s her capacity to understand and to act on her understanding. That capacity seems now to be gone. So there’s no moral reason to keep telling her things. And notice that failing to volunteer a truth isn’t the same as lying. If your wife were to ask you directly about her mother, however, you’d have a hard choice to make. I said we were better off knowing how things are, other things being equal. Are they?
"Even if she could make full sense of what you told her, the value of being in touch with reality might not be worth the pain of bearing the truth. We crave a formula here that will resolve these sometimes-clashing ideals. In your case, kindness surely does trump candor. But both matter, and we’re always in rocky territory, finding our footing only with care."
Thank you RSA. I am at the stage where I am constantly deflecting and it is a moral dilemma. I never want to lie to her that is not how are relationship was. So I agree what good will the information be, what will she do with it, will she understand, will it upset her. We have a very good friend who unfortunately is on his last legs, cancer Drs don't know why he is still here. It appears he will go soon and have been thinking should I tell her and my feeling has been no. I mentioned the couple the other day to her and said that he was not doing well, Lisa said oh thought he had died? So what is the point?
Good luck with your decision, Rona. You're in the best position to judge what's right. It took me hours to decide whether to say just a couple of sentences, and I don't think it mattered afterwards. I haven't brought the subject up again with my wife, and she doesn't talk... so it's over with. The slippery slope I mentioned in my question, for me, had to do with boundaries. The ethicist seemed to agree say that there were no pre-set boundaries when it comes to dementia. Okay.
That said, I thought the ethicist's answer was a little bit uninformed, which isn't surprising. I submitted this comment to the piece:
A few further nuances:
"...her capacity to understand and to act on her understanding. That capacity seems now to be gone." Yes. But for many people, that capacity comes and goes, for years, and that's when it's especially hard. Also, a critical point shouldn't be missed: during that time, a spousal caregiver has to decide to limit the amount or even the truthfulness of the information that another adult human being has access to, for their own good. That's a huge step, with difficult ethical considerations.
"So you should aim to do what you think he would have wanted you to do." This isn't in answer to my question but to a previous letter--and it's something that caregivers ask all the time about a spouse with dementia: What would they have wanted? It's a little strange for this not to have come up in the answer to my question. We pay attention to what we think living and dead adults would have wanted, but someone with dementia... I mean, isn't it relevant whether my wife had a close or distant relationship with her mother? People with dementia are in a kind of limbo in more ways than one.
"There are those who think that the point of truth-telling is to preserve their own moral purity." Every caregiver spouse I've talked with has been uncomfortable about the idea of lying for the greater good. Yet we all do it--kindness over candor. We're not all concerned about moral purity, but perhaps something more basic. Or just something less consequentialist, maybe.
RSA, that's a great question for the "Ethicist" column. Congratulations on having it selected for publication. I thought the Ethicist's answer was good but I agree with you that it was a bit uninformed.
Ordinarily, I don’t tell lies and I just hate liars. But I'm about to disprove your experience that, "Every caregiver spouse I've talked with has been uncomfortable about the idea of lying for the greater good." Unlike you and Ron, I have no qualms about lying to my husband and I do not find it to be a moral dilemma. My husband does not live in the same world that I do - he inhabits an alternative universe that has a different reality than the world I live in. He feels safe and content in that reality. To tell him the factual truth would disrupt his understanding of his universe and would in many cases be cruel. And besides, what would be the point? He would just forget what I told him and I'd have to repeat the hard truth to him all over again. And this would all be in order to adhere to a moral code. I'm sorry, but I'm not going to allow anyone (including myself) to hurt this sweet, vulnerable man.
I also question whether the standard for deciding what to tell a demented spouse is the legal standard so often used for end-of-life decisions: “What would they have wanted?” I think a more appropriate standard for everyday decisions is: “How would I want to be treated if I were in this situation?” Or to put it another way, “Do unto others as you would have them do unto you.”
I told my husband two years ago when his sister died. Now I think he gets confused between his sister and our daughter (who we have not seen and he has not spoken to in 9 years). He has asked me a few times if our daughter was still alive. At this point in his disease I don't think I would tell him anymore when a family member dies.
Myrtle, can I add my name to your post? You said exactly what I think and what I did as I was Claude's caregiver for seven or so years of formal diagnoses and several years before. "Little white lies" are not lies, they are just a kinder way to tell your spouse something rather than do it in a cruel way that could hurt their feelings.
When my DH's father passed away, 10 months before DH passed. I decided not to tell DH. He was in his own world by then and the news would of only caused great pain that he could not deal with. By that time he did not know who I was or our children. He did know the new SIL. That was funny how he never forgot him. But they had played guitars together a few times. And he remembered his father. I could not take that away from him.