Withholding Alzheimer’s Diagnosis from the Patient

[Anonymous]

Anonymous wrote:This thread makes me absolutely irate that this country does not more easily/readily allow for physician assisted suicide.

Unfortunately the slippery slope is real. Canada is expanding their program to include mental illness rather than only terminal diseases. I can easily see the process being corrupted in this country.

[Anonymous]

think FIL has been covering for MIL for months to years - just heard the story about her getting lost, for instance. Agree with PP that MIL is well within Stage 1 and declining rapidly.

Just an fyi but this sounds more adjacent, closer to stage 3. I took my mom in when she seemed to have mild cognitive impairment—-testing revealed much more significant than I had imagined and she was already stage 3. Routines often cover for losses.

It’s also why I would tell MIL asap. Soon she may not have the capacity to grasp her diagnosis at all and she deserves to hear it at least once and ask questions.

[Anonymous]

OP back - bumping. We will visit IL’s this week. Some minor updates: FIL and MIL have met in-person with some sort of financial planner. Mildly relieved as I think I posted that there hadn’t been a will or any end-of-life plans. Baby steps.

FIL excited and hopeful for the new Eli Lilly infusion medicine (amyloid receptor) and sent us a link about this. At least he’s reading or following Alzheimer’s related news.

FIL has spent the summer taking MIL to visit various friends and family members by car. They are vacationing with a friend now. Feel like maybe this is FIL’s way of explaining MIL’s “new normal” in that I think it’s obvious she’s experiencing significant cognitive decline and they surely see it, too.

MIL used to text or call frequently but today I realized that she hasn’t sent her own text since mid-June.

I have my own anxieties about seeing MIL and interacting with her.

[Anonymous]

Anonymous wrote:My Dad had Alzheimer's. So did his dad before him. I'm well aware of what this disease brings and I know that chances are it's coming for me.

I don't think it is wrong to keep the diagnosis from your MIL. It would clearly cause stress since it's what she has feared for a while.

It's a sad and slow decline (or it was for my family) but medically assisted suicide, especially in the early stages seems over the top.

It's attitudes like yours that keep patients in unimaginable suffering. Just because you saw the disease from the outside doesn't mean you felt what it was like inside. You cannot take someone's right to die away from them. But maybe you don't accept that a sentient adult has the right to make that decision? Is Christianity and the sin of suicide blinding you to that fact?

Studies conducted on self-administered pain medication show that end-stage patients who are given the ability to regulate their own dosage of morphine don't take more of it, and don't abuse it... but they report feeling more at peace and less in pain. It's because they are given control over their pain. I am convinced that passing laws to make assisted suicide easier, and making it widely available, even for early dementia diagnoses, won't increase the suicide rate by much. It will make patients more at peace with their decision not to kill themselves.

[Anonymous]

Everyone thinks they would off themselves because everyone thinks they would be like their normal selves trapped inside a declining brain. But actually that brain is you, so the person still feels like themselves a lot of the time, basically until they get stuck or fall into a “hole.” Like realizing they can’t find the car keys and it’s because the car got taken away five years ago. A lot of care giving is just gently turning people away from holes all day long and helping them feel like themselves as much as possible.

[Anonymous]

Anonymous wrote:Everyone thinks they would off themselves because everyone thinks they would be like their normal selves trapped inside a declining brain. But actually that brain is you, so the person still feels like themselves a lot of the time, basically until they get stuck or fall into a “hole.” Like realizing they can’t find the car keys and it’s because the car got taken away five years ago. A lot of care giving is just gently turning people away from holes all day long and helping them feel like themselves as much as possible.

OP back and this is a great point. MIL isn’t truly “herself” anymore and so her family seems perfectly fine keeping her diagnosis a secret from her and playing along. MIL definitely has agnosia - the inability to recognize or understand that she has a cognitive decline and diagnosis.

I’m actively in therapy to deal with this now but it’s infuriating to me that my MIL loved nothing more than to gossip about those in declining health and never could be trusted with secrets - and now we’re all playing along in this delusional game.

[Anonymous]

Anonymous wrote:

Anonymous wrote:My Dad had Alzheimer's. So did his dad before him. I'm well aware of what this disease brings and I know that chances are it's coming for me.

I don't think it is wrong to keep the diagnosis from your MIL. It would clearly cause stress since it's what she has feared for a while.

It's a sad and slow decline (or it was for my family) but medically assisted suicide, especially in the early stages seems over the top.

It's attitudes like yours that keep patients in unimaginable suffering. Just because you saw the disease from the outside doesn't mean you felt what it was like inside. You cannot take someone's right to die away from them. But maybe you don't accept that a sentient adult has the right to make that decision? Is Christianity and the sin of suicide blinding you to that fact?

Studies conducted on self-administered pain medication show that end-stage patients who are given the ability to regulate their own dosage of morphine don't take more of it, and don't abuse it... but they report feeling more at peace and less in pain. It's because they are given control over their pain. I am convinced that passing laws to make assisted suicide easier, and making it widely available, even for early dementia diagnoses, won't increase the suicide rate by much. It will make patients more at peace with their decision not to kill themselves.

Interesting. I think we do have a form of medical assisted suicide in the US. My dad was on life support for a day and when we took him off they said they would give him more and more morphine if he stayed at the hospital. Unless we wanted to take him home. Only 2 available options. So there was no getting out of the hospital for him, and the doctor said he went on life support when they gave him an anti-psychotic. It was 72 hours after being admitted and he was dead. I was shocked.

[Anonymous]

Is it even within the medical code of conduct to withhold a diagnosis from a patient?? This seems crazy to me.

[Anonymous]

Please please please get another opinion. I know someone who was told he has Alzheimer’s and he suffered with knowing that. That was almost 10 years ago and he definitely has dementia but it’s not Alzheimer’s- he knows who all of his family is and he can still speak, eat and drink.

Make sure all paperwork is in order and someone has POA. Also make sure everything is ready in case something happens to your FIL.

[Anonymous]

Anonymous wrote:Please please please get another opinion. I know someone who was told he has Alzheimer’s and he suffered with knowing that. That was almost 10 years ago and he definitely has dementia but it’s not Alzheimer’s- he knows who all of his family is and he can still speak, eat and drink.

Make sure all paperwork is in order and someone has POA. Also make sure everything is ready in case something happens to your FIL.

OP and I think-think-FIL has decided to forgo more testing (heard something about a spinal tap and maybe a PET scan?) and just stay the course now. This is all so weird.

I’m concerned about my FIL because I can tell he’s already tired but he’s very unwilling to ask for help or even admit there’s need for more support. He seems committed to retaining normalcy for MIL sake and pretending everything’s fine and keeping her diagnosis a secret from her.

He’s generally very calm - to a fault. They are a codependent couple and MIL even before dementia was unable to be without him (fearful of being alone) and almost childlike in her dependence upon him to do everything.

[Anonymous]

Anonymous wrote:

Anonymous wrote:This thread makes me absolutely irate that this country does not more easily/readily allow for physician assisted suicide.

Unfortunately the slippery slope is real. Canada is expanding their program to include mental illness rather than only terminal diseases. I can easily see the process being corrupted in this country.

Canada has expanded their program to include poverty and lack of legally mandated healthcare, too.

[Anonymous]

WTF is with a doctor who doesn’t give the patient the diagnosis but gets all clandestine with her DH about it?

Is this 1961?

[Anonymous]

Anonymous wrote:WTF is with a doctor who doesn’t give the patient the diagnosis but gets all clandestine with her DH about it?

Is this 1961?

OP here. Kaiser. Same thing.