A very interesting and thought-provoking article appeared in The New Yorker recently, in the October 8, 2018 issue. It can also be read online at this link. The author, Larissa MacFarquhar, digs deep into the ethics of lying to dementia patients. It’s a very good read and does a nice job of presenting arguments both for and against each side of the issue.
This matter of whether to play along with Mom’s delusions, or to correct her and try to get her to see the truth of a situation, is something we’ve been grappling with front and center for quite some time now. Early on, even before she was diagnosed, I came upon Penny Garner and Oliver James’ book, Contented Dementia. At the time I read it, it felt like a godsend. Here was my mother, getting increasingly upset and agitated at being told she was incorrect on something. The more we tried to reason with her and explain why, for instance, we were taking a right turn to go to the store when she was insisting the store was to the left, or telling her that a familiar landmark like a large building or park had been there for years when she seemed certain it had just recently been built because she didn’t remember it being there before, only resulted in her getting more agitated and upset and bitterly accusing you of lying to her. This is how it started. Another dilemma early on (and still even now) happens while she’s cleaning the house. She will find things that she doesn’t remember having, and then angrily accuse Dad of having purchased something without telling her. If Dad tries to tell her it’s something they’ve had for years, she concludes he’s lying to her and it makes her even more upset and angry. The more he, and we, try to explain “the truth” to her, the more it angers and upsets her, and the more it convinces her that we’re all lying to her, conspiring against her.
Then I found the Contented Dementia book. It seemed like a beautiful and perfectly harmless solution. Why keep trying to correct her when all it does is to anger her and remind her of her distressing diagnosis? Does it really matter if we agree that that street wasn’t there before and so must have been put in just recently? It all seemed, to me, to come down to a question of quality of life. Would you rather spend the last years of your life always arguing with loved ones, distressed and angry and certain they’re lying to you? Or would you rather have pleasant, enjoyable interactions where you feel heard and validated? Back when I was raising my two boys I was convinced (still am) that one of the keys to raising happy, well-adjusted kids was to enjoy as much positive, happy, joyful interation with them as possible, and to minimize the arguments and angry moments. That’s not to say there isn’t a time and place for negative, less-enjoyable interactions. Sometimes you have to put your foot down about something and they’re just not going to like it. Even with mom, there are sometimes when I find myself wondering if I should be putting my foot down more firmly and insisting on something she doesn’t like to hear. Of course, the last time I did this (almost one year ago now) it resulted in a truly traumatic incident. So.
About midway through The New Yorker article, the author mentions a study on ethics and dementia done in the UK by Graham Stokes, a British researcher of dementia. The study asked people who are currently diagnosed with dementia whether it was ethical to lie to dementia patients. The majority of responders felt that lying to dementia patients was not ethical. I found myself thinking of mom. If I were to ask her the same question, whether she would rather be corrected every time she’s not remembering something correctly, or whether she would prefer I just go along with whatever she’s saying so as not to upset her, she would almost certainly request that she not be lied to. But it’s not so simple, and thankfully the author of the article digs into some of the deeper philosophical questions at play.
Sometimes I read these articles and opinions from people like Mr. Stokes and I can’t help but conclude that they’ve never actually had to deal with taking care of a loved one who has dementia. It’s one thing to be a degreed scientist trying to solve problems through research and study, or a thorough and eloquent journalist reporting on a story, but as they say, “until you’ve walked in someone else’s shoes.” This is probably a good time to explain a current issue we’re dealing with, as it does a good job of illustrating the enormous gray areas that people caring for loved ones with dementia face all the time. For the past 6 months mom has been complaining of a significant pain on the left side of her skull (it may have been there longer but mom is extremely private and often won’t tell anyone about matters like these). The pain radiates from the front of her forehead all the way to a few inches above and behind her left ear. It’s so painful, in fact, that she can’t put any pressure on the left side of her head. She’s stopped sleeping on her left side, and she even wears her glasses in such a way that the earpiece is high up on her head, several inches above her left ear where the pain is (I have no idea how she’s able to keep her glasses on this way, but somehow she manages to do it).
When she first told me about this pain several months ago now, I told her she should see a doctor about it (she has no assigned primary care doctor, which is another matter we’ve been having a hell of a time with). In typical “mom fashion” she downplayed the pain along with my concern, insisting it was only the glasses she’d been wearing that was causing it, that she simply needed to see her eye doctor about it. I didn’t push it (because my mom WILL NOT be pushed on anything) but would keep asking her about it each time we talked. It’s been at least 6 months now and the pain is still there, maybe even a little worse (hard to tell with her as her story sometimes changes, I think because she doesn’t want me to be concerned so she will sometimes insist it’s not that bad, or that it’s different). Each time we talk about it I try to get a little more emphatic with my pleas to her to see a doctor about it. But whenever I show additional concern or emphasis on having it looked into, she just ramps up her denial and refusal to believe it’s anything serious.
People who don’t know my mom will invariably say things like, “Well, you should insist! You should tell her she HAS to see a doctor right away! You should put her in your car and take her to the ER to have it checked out!” But these simply aren’t possible, not without causing a very traumatic incident involving screaming, crying and physically fighting you off if you try to put her in your car to take her to the doctor. I’m not just saying this. It happened a year ago, and it was the kind of experience you never want to happen ever again. There’s also the ethical matter of her autonomy. Yes, she’s been diagnosed with Alzheimer’s, and yes that now allows those of us with medical power of attorney to make medical decisions for her, but she’s still in the earlier stages of the disease. I think most would agree that the matter of removing someone’s autonomy is best held off until absolutely necessary.
The ethical questions surrounding this matter about my mom’s very concerning head pain are serious and complex, and none of us can really answer them with full confidence. At least not at this time, as we’re fully up to our necks in this terrible mud. What if she has some sort of brain aneurism or tumor that could be dealt with if found in a timely manner? What if she has a serious stroke or even dies as a result of whatever it is that’s causing the pain in her skull? What responsibility do I or my dad have in that case? How ethical is it to drag her kicking and screaming to see a doctor against her will and destroying the last remnants of any trust she may now hold for those of us who care for her? It must even be asked, what if she’s intentional in her decision not to see a doctor because, in her mind, she feels that death by some sudden, unknown cause is preferable to the long, slow, agonizing death by Alzheimer’s, which she witnessed her own mother go through?
Fortunately for all of us, about two weeks ago she developed swelling and drooping of her left eye (the same side of the skull she’s been having all the pain), which finally caused her to make an appointment with her eye doctor. And the reason why she hadn’t yet made an appointment with him these past 6 months, despite her insistence with me that her pain was an eyeglass problem and not something a primary care doctor needed to see? Honestly, I can’t know for sure. It could very well be that she just kept forgetting to make one. Or it could be that she simply kept procrastinating on it. But now that she’s having these new issues with her left eye it prompted her finally to see him. I happened to be visiting her at the time, and once again I tried very hard to convince her that she should see a primary care doctor, or even head to the ER. I told her how her new eye issues could very well be related to the pain in her skull, and possibly even her advancing dementia. But once again she brushed me off and wouldn’t listen. Thank god she listens to medical professionals, because her eye doctor told her exactly the same thing and she has now FINALLY agreed to see a doctor.
The “lying” part of this story is the part I haven’t said much about here (perhaps a future post, we’ll see), having to do with all the behind-the-scenes maneuvering my dad and I have been doing, trying to get mom assigned to a primary care physician. Because of her anger and resistance to having dad or I intervene in any way with her health issues, we’ve been doing all of this work behind her back, without her knowing. But her suspicions (about a lot of things and not just this) are always lurking just below the surface, ready to roar into life at the slightest provocation. There have been many instances where she’s caught wind of these little lies, like when she went to have one of her prescriptions refilled and noticed the name of the prescribing doctor was a new one she didn’t recognize. It caused her to fly into a rage, adamant that she WOULD NOT see any doctor that Dad or I might have had a hand in arranging. But we are honestly desperate for her to see an actual doctor, and desperate for her to go willingly. We’ve tried so many things, so many other ways, to no avail. Yes, Dad and I did have a hand in finally getting her assigned to a doctor and even getting an appointment set up for her, but even when Dad lied and said he hadn’t set it up, her suspicions were enough for her to physically drive down to the clinic to raise hell and refuse the appointment. Luckily, we were able to avert disaster (me on the phone with the clinic manager and dad in the parking lot, afraid to enter the clinic for fear that mom would see him there), and even more luckily, that she went to see that eye doctor about this same time. It was only because he told her she needed to see a regular doctor that she agreed to see the one we’d arranged for her. Still, there was lying involved, and it’s not lost on me that, while most of mom’s suspicions about being lied to are just plain untrue and delusional, there are instances where she’s correct in her suspicions. And yet I know if we were to come clean and admit to setting up the doctor assignment it would only solidify her dementia-fueled paranoia that we’re all colluding against her and that nothing we say can be trusted. It’s such a enormous gray area. What I tell myself currently, and what I keep telling my Dad, is that everything we’re doing is for her safety and well-being, which is absolutely true.