Is this diagnosis and prognosis real? Should we seek a second opinion?

ReallyScaredSon

I've posted a few times now, the most recent being "How to respond to despair, depression, threats of suicide?" (https://www.alzconnected.org/discussion.aspx?g=posts&t=2147559727).

My mom has been in the hospital for almost two weeks.  The current plan to release her this Tuesday (which will be the two-week mark for her stay there).  Before she entered the hospital, I had done some research about the best places to get her evaluated, and this particular hospital kept coming up as having a good geriatric behavioral health unit.  She got there via 911 call, initially landing in the ER.

The 911 call was in response to what are essentially psychotic episodes she's been having with increasing frequency, in what appears to be some kind of "sundowner"-type syndrome, as these episodes predominantly happen in the middle of the night.  During these episodes, she is inconsolable, very delusional, tries to kick my dad out of the house, and was getting increasingly aggressive and physical.

I just personally spoke with her attending psychiatrist.  The diagnosis is "unspecified dementia".  (Another doc, a neuro psych, was unable to complete his evaluation because she could not or would not answer his questions.)  Basically, the doc's explanation is that my mom's core personality is such that she cannot accept there is anything wrong with her.  It's possible that she truly doesn't know there is something wrong, or that she does know, but her denial is so intense, that she'll never let herself accept the diagnosis.  The doc asked her two questions: (1) Do you believe you have any problems?  And (2) do you know why you're here?  To the first, she answered no.  To the second, she put it all on my dad: she believes he is trying to take everything from her, ruin her life, and she doesn't understand why.

Her current meds are Memantine (for memory), Seroquel (for anger/paranoia), and Remeron (depression).  My mom has a history of OCD, and took Prozac for many years for that.  Today the doc wanted to add Prozac to her med regimen to hopefully combat the OCD.  My mom refused.

Per the doctor, the prognosis is "poor, very, very poor".  There is no chance of stopping the cognitive decline.  That I can live with, and can accept.

But the doc went on to say, that because of mom's personality, she will never be able to accept her condition.  So all the confusion and uncertainty that comes with her condition will serve to make her paranoid, angry, anxious, depressed; she will always feel that those closest to her are doing terrible things to her (making her take drugs, putting her in hospitals or facilities).  Basically, she'll never be able to acknowledge and process that she has an impairment, and make peace with it... As if the cognitive decline wasn't bad enough.  She's only 68, in great physical health.  But she is basically trapped in a gut-wrenching perspective that the people who loved her all her life, have now turned on her for no apparent reason.

And it's that latter piece that I'm having trouble accepting.  I have a feeling that the doctor is probably right.  But to accept that, is to acknowledge that someone - my dear mother of all people - will basically live the rest of her (possibly long, given her age and physical health) life trapped in a living hell.  Frankly I am numb trying to process this.  Is it even worth seeking out a second opinion?

terei

Your mother has dementia.  Each patient will have their own symptoms that will change, + her her progression will not be exactly like another’s.

Not accepting that she has any problems is probably a symptom of 80% (guessing)of people with dementia, it is more common than not.  That may get better or worse.

You should try to find a way to get her to take the meds that the doctors advise to see if it will improve her behavior. Do this in any way you choose.  Put them in a different bottle + tell her they are for her blood pressure or any other reason that will get her to take them.   She does not need to know what she is taking…YOU do.

Educate yourself about dementia.  Nothing you say to her will ‘convince’ her of anything.  Tell her whatever makes her calm + compliant.   She is living in her own reality + the more you agree with her (that does not compromise her physical safety) the better off you will be.

A second opinion is not going to help unless she has a physiological reason for her symptoms that can be treated.   That is highly unlikely.

Everything you are describing is common with PWD + caregivers + relatives need to learn to ‘manage’ the PWD’s behavior.     I urge you to get her to take the meds, by whatever means you can….you may see dramatic improvement in her behavior

M1

RSS, unfortunately there are frequent situations in which the loved ones become the worst triggers for psychosis and aggression in the individual with dementia. That may be the case for your mother, and it may be that she will need placement somewhere where you and your dad do not see her for a period of time. She may not accept care from your dad, for instance. As sad as that is for both of them, it’s not uncommon. Her care and safety needs must drive the decisions, not wishful thinking. Sounds like the psychiatrist is being very forthcoming and I doubt a second opinion will be any different. That said, no good practitioner is ever going to discourage or be afraid of a second opinion should you so desire.

I’m so sorry you’re having to go through this. Keep us posted.

jfkoc

It does not sound like there has been a diagnosis following current protocols.

You can read about what need to be done by selecting ALZ.com at the top of this page aas well as looking online.

I would indeed look for another opinion. I would also read all I can about dementia. 

The future may not be as hopeless as you think. Diagnosis, proper medical care and caregiver education can make all the difference.

harshedbuzz

ReallyScaredSon wrote:

I just personally spoke with her attending psychiatrist.  The diagnosis is "unspecified dementia".  (Another doc, a neuro psych, was unable to complete his evaluation because she could not or would not answer his questions.)  Basically, the doc's explanation is that my mom's core personality is such that she cannot accept there is anything wrong with her.  It's possible that she truly doesn't know there is something wrong, or that she does know, but her denial is so intense, that she'll never let herself accept the diagnosis. 

I don't know that this aspect of your mom's dementia is all that unique to her personality. The inability for a person with a cognitive shift/certain mental health conditions to be able to appreciate the areas in which they are lacking is pretty common. It's called anosognosia.

Her current meds are Memantine (for memory), Seroquel (for anger/paranoia), and Remeron (depression).  My mom has a history of OCD, and took Prozac for many years for that.  Today the doc wanted to add Prozac to her med regimen to hopefully combat the OCD.  My mom refused.

In terms of a second opinion, these are the sorts of meds typically prescribed given how your mom presents. Prozac or another SSRI might be a useful addition, perhaps it could be hidden in her food if your feel strongly that it might relieve her anxiety/OCD. 

Per the doctor, the prognosis is "poor, very, very poor".  There is no chance of stopping the cognitive decline.  That I can live with, and can accept.

Alas, that comes with the territory and it is a difficult thing to wrap one's mind around especially when the PWD is as young as your mom. 

But the doc went on to say, that because of mom's personality, she will never be able to accept her condition. 

In a lot of ways, it was a blessing when my dad's anosognosia took hold and he became less aware of all he had lost in terms of cognition and memory. In some respects it made managing his care decisions trickier, but he was relieved of the pain of this aspect of the disease. 

 So all the confusion and uncertainty that comes with her condition will serve to make her paranoid, angry, anxious, depressed; she will always feel that those closest to her are doing terrible things to her (making her take drugs, putting her in hospitals or facilities).  Basically, she'll never be able to acknowledge and process that she has an impairment, and make peace with it... As if the cognitive decline wasn't bad enough.  She's only 68, in great physical health.  But she is basically trapped in a gut-wrenching perspective that the people who loved her all her life, have now turned on her for no apparent reason.

That's where she is today. It could change. My dad had all of those same feelings- that my mom had turned on him and that I was getting even by taking control of his life and robbing him of his independence. But over time, his thinking changed, and he came to see our efforts as getting him the best possible care. He eventually saw us as his allies and not the enemy. 

And it's that latter piece that I'm having trouble accepting.  I have a feeling that the doctor is probably right.  But to accept that, is to acknowledge that someone - my dear mother of all people - will basically live the rest of her (possibly long, given her age and physical health) life trapped in a living hell.  Frankly I am numb trying to process this.  Is it even worth seeking out a second opinion?

Since your mom was unable and/or unwilling to go along with getting a full evaluation, I don't see the point in subjecting her to another workup if you are fairly certain the diagnostic protocol was followed. A different doctor offering the same diagnosis is unlikely to convince her she has an issue and that you and your dad are good guys looking out for her.

HB

Iris L.

ReallyScaredSon wrote:

But the doc went on to say, that because of mom's personality, she will never be able to accept her condition.  

This is anosognosia.  Anosognosia is a characteristic of the dementias and also of other neurologic conditions.  Anosognosia is distinct from denial.  

I was shocked to learn myself that there are professionals who never heard of anosognosia.  IMO, it is impossible to work with PWDs without understanding anosognosia.

So all the confusion and uncertainty that comes with her condition will serve to make her paranoid, angry, anxious, depressed; she will always feel that those closest to her are doing terrible things to her (making her take drugs, putting her in hospitals or facilities).  

PWDs lose the ability to think sequentially.  They no longer think, "if my purse is missing, I must have put it somewhere."  Instead they think, "if my purse is missing, X must have stolen it!"  Ironically, I have had the same thoughts.  

Iris

dayn2nite2

The "rest of her life" is a matter of how you look at it.

You can see the rest of her life as the "living hell" as you describe it, where you and she are miserable and you are trying to struggle against the progression of the disease.

OR

You can choose to meet her where she is and create a decent relationship with her today and for the rest of her days.  

A second opinion is not needed here - a change in your perspective is.  Your mother sounds like she may have been a more difficult personality prior to her illness anyway, so I don't know what the quality of your relationship with her was.  You may never be able to reach a "good" relationship, but the pity for the rest of her life is only going to make things worse.

King Boo

She is in the perfect site for you to get documentation of her need for proxy ( someone else love to represent her interests ).   Then there is no Mom refusing appropriate medication.

You have to ask for this.

ReallyScaredSon

I said: But the doc went on to say, that because of mom's personality, she will never be able to accept her condition.  

To which Iris L. said: This is anosognosia.  Anosognosia is a characteristic of the dementias and also of other neurologic conditions.  Anosognosia is distinct from denial.  

I was shocked to learn myself that there are professionals who never heard of anosognosia.  IMO, it is impossible to work with PWDs without understanding anosognosia.

For what it's worth, we found out this weekend that the attending physician for my mom is actually the same age as my parents (67).  She said she's been practicing geriatric psychiatry for 35 years.

Regarding anosognosia: how do you determine if it's that or intense denial?  And in the end, does it really matter?

dayn2nite2 wrote: The "rest of her life" is a matter of how you look at it.

You can see the rest of her life as the "living hell" as you describe it, where you and she are miserable and you are trying to struggle against the progression of the disease.

OR

You can choose to meet her where she is and create a decent relationship with her today and for the rest of her days.  

A second opinion is not needed here - a change in your perspective is.  Your mother sounds like she may have been a more difficult personality prior to her illness anyway, so I don't know what the quality of your relationship with her was.  You may never be able to reach a "good" relationship, but the pity for the rest of her life is only going to make things worse.

 

She wasn't a difficult person before the illness.  But she did struggle with OCD at times in her life.  Her doctor (geriatric psych) told us that there are three categories of people who typically suffer dementia worse than the rest:

 1. People who suffered childhood trauma or abuse

 2. Alcoholics

 3. People who struggled with OCD and perfectionist tendencies

 

OCD and anxiety run rampant in my mom's family.  Of course we'll never know for sure, but I do believe she had OCD as a child.  I've learned a fair amount of OCD because my daughter has it.  In the time of my mom's youth, it simply wasn't recognized as a condition, and even if it was, her parents didn't have the means to help her.  And my dad (who was literally my mom's high school sweetheart), went on to say that my mom had unrealistic expectations set on her as a child.  She was the oldest, the "responsible" one.  She was held to a double standard compared to her other siblings.  She has an 8-year younger sibling she was largely responsible for taking care of.

Perhaps none of that amounts to "trauma" or abuse, but I know enough about OCD that such an upbringing would certainly exacerbate an anxiety disorder.  Furthermore, she's gone on to tell my dad and her sister that her own dad sexually abused her and used to call her a "piece of sh--".  These stories only came out since the onset of the dementia, so they may not be true, but we don't know.

The expectation is that my mom will be discharged from the hospital on Tuesday.  We have decided to move her straight into a memory care facility.  There is simply no way my dad can take care of her.  We are banking on the meds to bring her some peace, but my dad was unable to get to to reliably take a single med, there's simply no way he can keep her on the battery of meds she now is prescribed (memantine, lorazepam, fluoxetine, remeron, seroquel, melatonin).

Tuesday will be the two week mark for her time in the hospital.  Due to covid, the hospital is on lockdown.  She has begged my dad every single day to bring her home, to sneak her out in the back of his car if he has to.  Get her out by any means necessary!  They are doing horrible things to her (though she can't say what).  She still regularly talks about suicide.

Two weeks and professionally administered meds, and she still has not adapted to life in the hospital.  Of course, the memory care facility is nicer - we believe it's one of the better places in the area.  And she will be able to have visitors (at any time).  And the focus will be on getting comfortable, rather than testing and evaluations (which definitely agitate her).

Of course we will whatever we can to comfort her.  But she cannot go home.  And while I don't feel like we're just sitting around pitying her, the doctor told us explicitly, she's worried that my mom may not be able to ever escape the depression.  And that's why I ask, does it really matter of it's anosognosia or simply complete and utter denial?  Does that change the family/caregiver's approach?  Does that change her med routine?

It's hard for me, and the rest of my family, to accept that it's not denial.  Well before dementia, she was an almost painfully private person, especially in matters of health.  Forget dementia, even routine ailments everyone has from time to time - those she would keep private.  She never wanted anyone to think she was anything less than the high standard to which she held herself.  And early on when her memory started to go, she put a lot of effort into "memory preservation" tactics: she bought a bunch of memory and brain teaser games.  She picked up an instrument she hadn't played since high school band.  At the time, I didn't know there were cognitive issues, and just thought it was someone who recognized they were getting older and wanted to exercise their brain.

But even so, how do we explain to her why this facility is her new home, and why she can't return to her "real" home?  She either is incapable of knowing she has an impairment, or is unwilling to accept it - but does it matter?  What is real, is that she's still smart enough to know, if she has to stay in a special facility, that something is wrong with her.  That's how she feels now in the hospital, and I have a hard time believing she'll feel differently in her new home.

Fairyland

You DON’T explain any of this to her. You tell her it is until the doctor says she gets better. Then change the subject. Again and again. 

YOU need to give yourself some space and self-care to come to terms with your upset and fear.  You are right it doesn’t matter right now what you call it, denial, anosognosia, personality - she is where she is and is very unlikely to change for the better in terms of understanding and accepting her limitations. 

Keep her safe, in place,  and exploring treatment options, while everyone adjusts, and it IS likely that things will get better even if it’s just you all getting used as possible to the new situations.

harshedbuzz

ReallyScaredSon wrote:

Perhaps none of that amounts to "trauma" or abuse, but I know enough about OCD that such an upbringing would certainly exacerbate an anxiety disorder.  Furthermore, she's gone on to tell my dad and her sister that her own dad sexually abused her and used to call her a "piece of sh--".  These stories only came out since the onset of the dementia, so they may not be true, but we don't know.

IME, ACEs (adverse childhood experiences) do impact health- including mental health- for a lifetime. That said, a story that is only now coming to light could be a confabulation. The story about dad sexually abusing her may be a complete confabulation or mis-remembered. It could be she was abused sexually but not by her dad- by some other adult. According to a friend who works as a clinical psychologist with this population, it would be highly unusual for a single child to be abused in such a manner. This kind of assault is more about power and often all of the children of that sex are abused- sometimes brothers, too. Consequently, the sister may have a better sense of whether this was true or not. 

It could also be a situation where this event happened to someone she knew or even something she saw on TV. My dad, who had mixed dementia (one was an alcohol-related one known for confabulated memories) used to rewrite family history on the regular earlier on in his disease. He would credit me with ghastly parenting that was actually things his sister and my sister did. As the disease progressed, he often internalized what he saw on TV and would report that he'd been kidnapped and murdered the previous evening by bad guys or that his home was the one destroyed by the storm he saw on TWC. I had to put parental controls on the TV to shut this down. Once he even pointed to his elbow and told me all about his knee replacements surgery. Spoiler alert: my mom's the one how had TKR, not dad. 

The expectation is that my mom will be discharged from the hospital on Tuesday.  We have decided to move her straight into a memory care facility.  There is simply no way my dad can take care of her.  We are banking on the meds to bring her some peace, but my dad was unable to get to to reliably take a single med, there's simply no way he can keep her on the battery of meds she now is prescribed (memantine, lorazepam, fluoxetine, remeron, seroquel, melatonin).

Tuesday will be the two week mark for her time in the hospital.  Due to covid, the hospital is on lockdown.  She has begged my dad every single day to bring her home, to sneak her out in the back of his car if he has to.  Get her out by any means necessary!  They are doing horrible things to her (though she can't say what).  She still regularly talks about suicide.

Two weeks and professionally administered meds, and she still has not adapted to life in the hospital.  Of course, the memory care facility is nicer - we believe it's one of the better places in the area.  And she will be able to have visitors (at any time).  And the focus will be on getting comfortable, rather than testing and evaluations (which definitely agitate her).

Moving mom directly into a care community from a hospitalization is absolutely the best way to do this. Good on you and your dad. 

Hopefully the meds will begin to show some benefit; the SSRIs can take some time to dial down anxiety and may need to be titrated or swapped out. If you don't see an improvement of the generic Prozac, ask the geripsych about a Genesight test.

Of course we will whatever we can to comfort her.  But she cannot go home.  And while I don't feel like we're just sitting around pitying her, the doctor told us explicitly, she's worried that my mom may not be able to ever escape the depression.  And that's why I ask, does it really matter of it's anosognosia or simply complete and utter denial?  Does that change the family/caregiver's approach?  Does that change her med routine? 

On one hand it doesn't really matter whether she is deeply in denial or has anosognosia except as it impacts you and your dad's approach. I would assume anosognosia- especially with a mental health diagnosis as well as dementia. Ideally knowing that your mom doesn't have the ability to recognize her own shift in memory and cognition should keep you from continuing to attempt to either convince her she's got dementia and discussing it with her. 

It's hard for me, and the rest of my family, to accept that it's not denial.  Well before dementia, she was an almost painfully private person, especially in matters of health.  Forget dementia, even routine ailments everyone has from time to time - those she would keep private.  She never wanted anyone to think she was anything less than the high standard to which she held herself.  And early on when her memory started to go, she put a lot of effort into "memory preservation" tactics: she bought a bunch of memory and brain teaser games.  She picked up an instrument she hadn't played since high school band.  At the time, I didn't know there were cognitive issues, and just thought it was someone who recognized they were getting older and wanted to exercise their brain.

My dad and my aunt both recognized they were experiencing a cognitive shift very early on- dad started to read more serious material eschewing his spy novels in favor of history texts and biographies. My aunt started to do crosswords and other puzzles. When we cleaned out her house, I found a 12' long closet filled top to bottom with cut-out NYT crosswords and more under the bed.  

But even so, how do we explain to her why this facility is her new home, and why she can't return to her "real" home? 

I have to ask why you are even considering telling her this. PWD live in the here and now. I would create a fiblet to explain the move and rinse and repeat as necessary. 

She either is incapable of knowing she has an impairment, or is unwilling to accept it - but does it matter?  What is real, is that she's still smart enough to know, if she has to stay in a special facility, that something is wrong with her.  That's how she feels now in the hospital, and I have a hard time believing she'll feel differently in her new home.

The strategy I used for my dad might be applicable to this situation with tweaks. Dad was diagnosed in the hospital as the result of a psychotic episode; he was transferred to a SNF/rehab for therapy to allow my mom and I to set up a new home for them nearer where I live. He hated the SNF and carried on mightily about it- he hated it so much he actually recalled being there almost a year later when it became necessary for him to move to a MCF from home. We created a story that his new doctor wanted him to have some PT and OT to get stronger and that we found a nicer private rehab instead of the one he was in before. In your shoes, you could tell mom you are moving her to a nicer hospital where they'll take better care of her. We presented his "rehab" as "doctor's orders" and validated his frustration around not being home while reminding him we wanted the best care for him. 

I wish you luck going forward. This is hard stuff.

ReallyScaredSon

Thank you for the quick replies!  I just want to be clear, we have no intention of trying to convince her or even telling her she has dementia/cognitive impairment.  Re-reading my previous post, I can see how I might have suggested that, because we believe she's in denial, we therefore must convince her of the reality.  And yes, what she said about her dad could very well be confabulation (she's full of stories we know are not true).  But more importantly, we know that, whatever the reason, asking her to confront her impairment in any way will greatly upset her, so we don't go there!  My dad learned long to avoid even the slightest hint or suggestion of cognitive impairment to her (and is arguably the primary reason why this went from "pretend nothing is wrong" to boiling over to crisis/hospital/MC facility in the span of less than a month).

The point I was really trying to make is that we can tell fiblets and little white lies all day, but I truly believe she will figure out where she is.  It's a nice place, less than two years old, clean, nice staff.  Feels like a hotel to me, a hotel with exceptionally large common areas... and a nurse's station... and she and her new neighbors (almost all of whom are 10+ years older than her) wearing ankle bracelets... My mom still has enough intuition to realize where she is.  We can tell her the doctor ordered her there.  But for what?  Why?  There's nothing wrong with her, why does she have to wear this ankle bracelet?  Why can't she go home?  When does she get to go home?  What is the doctor waiting on?  How much longer?  Why can't my dad just sneak her out?  Why should she go on living if this is how her life will be?

And my dad really struggles with telling her lies.  It comes from a good place - he would have died before he lied to her prior to her impairment.  And he knows, at an intellectual level, that lies are necessary to keep her happy.  But in the moment, when he's with her or talking to her, it's nearly impossible for him to not be the same husband he's been for 45 years, putting honesty with her above all else.