Withholding Alzheimer’s Diagnosis from the Patient

[Anonymous]

The patient is my MIL. My FIL noticed some concerning behavioral changes in her about 6 months ago (got lost driving solo, locally) and has had several follow up appointments with a neurologist.

Latest appointment last week the neuro gave a diagnosis of likely Alzheimer’s (said wrote referral for spinal tap and PET scan for more accurate diagnosis).

FIL decided that MIL not be told what is happening and certainly not told that she has Alzheimer’s. FIL reported privately (ahead of the appointment) that developing Alzheimer’s has been MIL’s fear. MIL told FIL recently that she would end her life rather than face Alzheimer’s. So, FIL instructed the nurse and doctor NOT to use the “A-word” or tell her directly what her diagnosis is.

So, we are reeling from the diagnosis and her premeditated thoughts and plans. Anyone ever been through this - keeping the medical information from an elderly person?

MIL insists she feels fine and “normal.” I’ve been reading up on anosognosia ("a neurological condition in which the patient is unaware of their neurological deficit …”) and thinking this applies.

[Anonymous]

I think it's fine to keep the diagnosis from her. It doesn't really change much to be honest. If it keeps her relaxed and still able to enjoy life to a degree, then let sleeping dogs lie.

Once people have dementia, there are going to be a lot of therapeutic lies. Think of this as the first of many.

[Anonymous]

OP. Thank you. Now reading about therapeutic lies.

[Anonymous]

From my experience, the progression of MIL’s Alzheimer’s will be tougher on FIL than MIL. If she can continue living in her familiar home with FIL & eventually additional caregivers, she will probably remain pretty content, even as she loses more memories/cognitive abilities. It is more difficult on the spouse as they lose their partner, yet continue to care for them.
I don’t think FILs request is unreasonable, given MILs statements about suicide. I would make sure to provide support to FIL - though he is not the patient, he will be needing care & support.

[Anonymous]

If it is that in a while she will not even understand what it is and it may really upset her.

[Anonymous]

You are taking away her option of taking her life. Once cognitive impairments get too advanced, you lose that legal option. She may be past that already, but be aware that you may taking away her ability to legally end her life.

[Anonymous]

Anonymous wrote:You are taking away her option of taking her life. Once cognitive impairments get too advanced, you lose that legal option. She may be past that already, but be aware that you may taking away her ability to legally end her life.

This. She doesn’t want to live with memory loss and she said that in a sane time. Honor her and that. Let her make a choice for herself. Support her in this journey. I’m sorry for her and for you all but please don’t take away her own freedom of choice.

[Anonymous]

Anonymous wrote:

Anonymous wrote:You are taking away her option of taking her life. Once cognitive impairments get too advanced, you lose that legal option. She may be past that already, but be aware that you may taking away her ability to legally end her life.

This. She doesn’t want to live with memory loss and she said that in a sane time. Honor her and that. Let her make a choice for herself. Support her in this journey. I’m sorry for her and for you all but please don’t take away her own freedom of choice.

All of what these PP said. When faced with an actual diagnosis, she might feel differently. But it is cruel to keep it from her.

[Anonymous]

As a nurse, I engage in therapeutic lies all the time with Alzheimer's and dementia patients. But this is not what that is. It sounds like she still is pretty early on in her diagnosis. The beginning stages of memory loss is often quite scary. You're aware enough to know you're losing your mind. It's cruel to withhold the diagnosis from her.

Does your FIL even get what the future looks like? How heartbreaking it is to see your loved one lose all memory of who they are and who their loved ones are? To lose the basic ability to use the bathroom, bathe themselves, communicate, remember to eat and drink, etc. I'm a fairly big supporter of physician assisted suicide after what I've witnessed in my career.

[Anonymous]

Anonymous wrote:OP. Thank you. Now reading about therapeutic lies.

This is not a therapeutic lie. This is withholding a diagnosis from someone because you are afraid how they will handle it. A therapeutic lie is when my dad would tell me how he spoke on the phone with his brother that day and I wouldn't remind him his brother wasn't alive. Or he'd talk about my brother visiting that day and I wouldn't correct him that it had been a couple weeks ago that the visit occurred.

[Anonymous]

Anonymous wrote:As a nurse, I engage in therapeutic lies all the time with Alzheimer's and dementia patients. But this is not what that is. It sounds like she still is pretty early on in her diagnosis. The beginning stages of memory loss is often quite scary. You're aware enough to know you're losing your mind. It's cruel to withhold the diagnosis from her.

Does your FIL even get what the future looks like? How heartbreaking it is to see your loved one lose all memory of who they are and who their loved ones are? To lose the basic ability to use the bathroom, bathe themselves, communicate, remember to eat and drink, etc. I'm a fairly big supporter of physician assisted suicide after what I've witnessed in my career.

This right here. A therapeutic lie is not what this is at all. I can't believe a doctor would even go along with withholding a diagnosis from a patient who isn't too far gone, cognitively.

My dad has dementia. Therapeutic lies are not this at all. They are small lies to help not upset the person. For example, my dad doesn't remember that his favorite uncle has passed. When he wants to call him, I silence my cell and dial it from our landline. I tell my dad his uncle is out/napping/etc and have him leave a message. If he does remember later about the call, I say something like "yes, you did call Uncle Mitch. You talked about your garden this year." And he'll usually go "oh, that's right! I did talk to him." I don't say he talked TO my Uncle. I tell him he called him and talked about ___. Small lies.

Sometimes he'll wake up and think it's his birthday. We roll with it. We tell him happy birthday and have him select a special meal for the day. We get him a cupcake treat or some donuts, which are his favorite. No harm, no foul. And really, once you reach 75, why not celebrate all that time?

[Anonymous]

Can a husband even make that call for his wife when she is still competent to make decisions?

[Anonymous]

Anonymous wrote:

Anonymous wrote:As a nurse, I engage in therapeutic lies all the time with Alzheimer's and dementia patients. But this is not what that is. It sounds like she still is pretty early on in her diagnosis. The beginning stages of memory loss is often quite scary. You're aware enough to know you're losing your mind. It's cruel to withhold the diagnosis from her.

Does your FIL even get what the future looks like? How heartbreaking it is to see your loved one lose all memory of who they are and who their loved ones are? To lose the basic ability to use the bathroom, bathe themselves, communicate, remember to eat and drink, etc. I'm a fairly big supporter of physician assisted suicide after what I've witnessed in my career.

This right here. A therapeutic lie is not what this is at all. I can't believe a doctor would even go along with withholding a diagnosis from a patient who isn't too far gone, cognitively.

My dad has dementia. Therapeutic lies are not this at all. They are small lies to help not upset the person. For example, my dad doesn't remember that his favorite uncle has passed. When he wants to call him, I silence my cell and dial it from our landline. I tell my dad his uncle is out/napping/etc and have him leave a message. If he does remember later about the call, I say something like "yes, you did call Uncle Mitch. You talked about your garden this year." And he'll usually go "oh, that's right! I did talk to him." I don't say he talked TO my Uncle. I tell him he called him and talked about ___. Small lies.

Sometimes he'll wake up and think it's his birthday. We roll with it. We tell him happy birthday and have him select a special meal for the day. We get him a cupcake treat or some donuts, which are his favorite. No harm, no foul. And really, once you reach 75, why not celebrate all that time?

Exactly this! I remember when I first started my career my preceptor was explaining therapeutic lies. She said "why would you upset someone reminding them that their wife passed away so that they can sit and mourn for however long they remember, then the stop remembering and are happy again, only for you to come back the next day and remind them of their loss. It's a horrible groundhog's day. ".

I love that you celebrate your dad's Birthday whenever he thinks it is his. It's such a small thing but makes a huge difference

[Anonymous]

Having witnessed severe dementia in my MIL, I would want to end my life if I were diagnosed with Alzheimer's. I think it's a reasonable choice and I would want to have that choice. TBH if your FIL and all of you knew what might be in store, you might support that too.

[Anonymous]

[quote=Anonymous]Can a husband even make that call for his wife when she is still competent to make decisions?[/quote]

I would certainly hope he's an activated DPOA or else this opens up a whole other issue. Which he can be even if she is still competent. My dad had my medical power of attorney activated for him because even though he could make his own decisions, he felt too confused and overwhelmed to do so.