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ALZ patients: Do they know? Should they know?
john_n
Posted: Sunday, August 18, 2019 5:45 PM
Joined: 8/13/2019
Posts: 4


Thank you all for the kind words of support when I joined last week. (I thought I added a reply to that thread, but it didn't seem to take.)

One big question I've had, both when mom's memory problems started, and since her ALZ diagnosis: Do patients know they have ALZ? Should they know?

Even as problems were becoming evident and she went through various medical tests, mom won't say anything about it … when I ask her how she is or how doctor's visits went, she says she's "fine" or that the doctor said she was in good shape. For all her cognitive and behavioral problems and dad's difficulty handing them, she insists that "dad has changed" in the past two years. The closest she came to admitting anything was during my visit one afternoon, she started crying and said something like, "I look around and things don't make sense and I don't have the words." But that quickly passed and she was back to her usual (now) self.

So I guess I'm wondering, is this a common symptom of relatively* early Alzheimer's, that they aren't or can't be aware they are suffering the disease? Or is this just my mom being either in denial or too proud to admit what she's going through?

 

Thank you all.

 

*I'm not sure what "stage" mom is technically in. She seems to still have most of her long-term memory and knows who people are and can remember most of our family history over the years; her short-term memory is dicier: She remembers I was home and she remembers I said I'd come back for her birthday, but she rarely remembers what day it is or where we went for lunch that day or even what time of day it is, and she gets very confused doing tasks like getting dressed or cooking in the kitchen. So I'm not sure.


harshedbuzz
Posted: Sunday, August 18, 2019 6:31 PM
Joined: 3/6/2017
Posts: 1636


It's likely your mom has anosogonosia and can not recognize, for the most part, the issues she is having. She's not in denial because she truly believes she's just as fine as she's always been.

Dad's neurologist both told him he had mixed dementia- Alzheimer's and Korsakoff's. Buy-in on the Korsakoff's would have been helpful as lifestyle changes could have stopped the progression of that set of symptoms. Initially, he could recall being told but feel there was anything wrong with him. Over time he couldn't recall it. My mother, early on, would get angry with him and the situation and would remind him which never went well. It didn't take her long to figure out that wasn't a path to cooperation and a calm household. 

This page can help you understand a bit about staging.

https://tamcummings.com/stages-of-dementia/



zauberflote
Posted: Sunday, August 18, 2019 6:58 PM
Joined: 10/24/2018
Posts: 353


Hi John-- I think in the early stages my mom had an inkling that she had memory, and math, and cooking/shopping issues, as she did ask for help. Oddly, she stopped driving of her own accord when she had a near-fatal accident at the edge of her apartment's garage lot. She hit the wrong pedal and nearly shot over the edge of a 50'-deep ravine. 

Early on when she'd just moved to her current facility, we happened to be at the stoplight at which the (newly painted) sign for her place is planted. She took one look, turned to me with sheer terror in her wide wild eyes, and said, "I don't have Alzheimer's, do I??!!??!!??" I didn't know about fiblets yet, but was able to say, not that I know of! Her PCP had changed the dx code from Alz to dementia on her final paperwork before Mom had moved. She has since then slipped into anosognosia, and really, what's the point of expecting her to understand, at almost 92, her dx. 

To your mom, it probably does seem that her husband has changed-- and indeed he probably has, in ways that perhaps only a wife's intuition can sense.   


Stacypelissier
Posted: Sunday, August 18, 2019 7:02 PM
Joined: 4/24/2018
Posts: 6


Hi John my dad was diagnosed in June 2015.  He knew he was having issues with his memory.   But when we tried to explain to him what was happening and what dementia and Alzheimers meant,  he didn't understand.   To this day we tell him his pills are for his memory.   I think even that,  now,  escapes him and he just takes the pills because my brother and I all him too.  My dad's in early stage 6 of the 7 stages of Alzheimer's.
Greg G
Posted: Sunday, August 18, 2019 7:47 PM
Joined: 2/8/2017
Posts: 920


Hey John,

My dad knew something was wrong but we didn't dwell on it.  "I just kept repeating that I'm here to help you with anything and everything.  I've got your back.  We'll do this together."

Mom on the other hand had anosognosia.  She did thing that something was up but didn't believe it was dementia.  Since discussing it caused her anxiety, we never brought it up.  Never challenged her about it.

Good luck and best wishes, Greg


Army_Vet60
Posted: Sunday, August 18, 2019 8:02 PM
Joined: 6/21/2019
Posts: 361


My wife couldn't explain it, but she always knew she was sick. She got very frustrated up to the end that she couldn't remember words. That was one thing that always bothered her, losing the ability to communicate verbally.
Suziesb
Posted: Sunday, August 18, 2019 10:37 PM
Joined: 5/22/2018
Posts: 185


My mom suspected she had Alzheimer's before she was diagnosed (it was always a fear of hers that she would get it). After she was diagnosed we kept it very honest with her, very simple and have told her. Though sometimes now when she forgets and says "What's wrong with me?" I'll say "You have some memory issues."
Victoria2020
Posted: Monday, August 19, 2019 3:31 AM
Joined: 9/21/2017
Posts: 827


"Do patients know they have ALZ? Should they know?"  

 The doctor gave the DX directly , which was forgotten.

 When asked "I'm not senile am I? I don't have Alz do I?" Saying "yes" is just going to cause stress, I ask "why?" They say "I'm just not remembering things" , I reply "yeah there are memory things" sort of validate what they've noticed without hammering in the "big gun" stress causing words.

 It gets frustrating when they don't remember major topics, like who is who or who is alive. But trying to educate them or get the message through doesn't work. It is an in the moment thing for them that we need to get them through.

 And it is, well, mind boggling sometimes, I was blamed in what seemed a normal reality based conversation for selling a classic car the PWD's father  sold when PWD was a MINOR. I wasn't selling used cars as a kid in Georgia.

  First time I didn't handle it too well- like stunned  and defensive, second time it came up-- which was really sad that it did , just asked what was cool about the car.

 It is hard not to want to make our case, use the facts, get them set straight since their disease turns our world  upside down but it doesn't help. Like someone was  showing funeral photos to their PWD to get the message about deaths through. They either remember or they don't that they were there and what it means. Truth can be cruel. We're waiters at their table, you don't tell them what's going on in the kitchen, just make the short-term meal nice.

  


Dot9000
Posted: Monday, August 19, 2019 6:31 AM
Joined: 6/12/2019
Posts: 44


Greg G wrote:

Hey John,

My dad knew something was wrong but we didn't dwell on it.  "I just kept repeating that I'm here to help you with anything and everything.  I've got your back.  We'll do this together."

Mom on the other hand had anosognosia.  She did thing that something was up but didn't believe it was dementia.  Since discussing it caused her anxiety, we never brought it up.  Never challenged her about it.
________________

Hi John,
 I hope you are hanging in there. My mom also has Anosognosia. Some days, she wants to know what is happening, others she has no clue (is blissfully ignorant) and then different days she is mildly agitated and says nothing is wrong with her (mostly when we are trying to do labs or doc visits). Like Greg, we just keep telling her we are there to help her and we'll get everything done together as a team. Thank heavens my brother and I are on the same page. Calmness seems to go over well and we just take each time as it comes (as we are never sure which mind set she will be in). You learn to go with the flow and just do whatever you can to make her stay calm and contented.



harshedbuzz
Posted: Monday, August 19, 2019 7:25 AM
Joined: 3/6/2017
Posts: 1636


Army_Vet60 wrote:
My wife couldn't explain it, but she always knew she was sick. She got very frustrated up to the end that she couldn't remember words. That was one thing that always bothered her, losing the ability to communicate verbally.


Early on, dad had a sense that he was sick but that his memory loss was unimportant and temporary. Sometimes he'd wake in the morning and announce that his memories came back to him when he was thinking overnight; he would offer up the address of where he lived when he was 6 or the phone number my mother gave him when she first met him as proof. What he had for dinner the night before or the day of the week escaped him. 

I recently deleted a video I made for his psychiatrist in which he was threatening all manner of retribution when he "got his head square" and "saw down with his pen and pencil an figured out where every $50 went". He knew on some level that he'd lost just over $350K day trading and ascribed the loss to me short-selling homes he didn't even own.

Dad's speech and communication changed with the disease. When he lost simpler words, he substituted "fancier" ones- his grands and great-grands became "my descendants". His language pragmatics suffered- he could no longer participate in the give-and-take volley of real conversation and relied on monologues, questions, random declarative statements interspersed with strings of toddler-like jargoning. 


NoSiblings
Posted: Monday, August 19, 2019 9:41 AM
Joined: 9/3/2016
Posts: 214


Most likely, as others have said, your mom doesn't recognize the problems she is having even though she may know she is struggling more. Thus she looks for something else to blame (your dad has changed, etc.). Also, she may not remember what the doctor told her. A lot depends on how far along she was when diagnosed.

When the doctor first said the word "Alzheimer's" to my mom and I, she remembered it for a little while. Long enough to tell me after we got home, "I would have rather he told me I have cancer." But then it quickly was if he had never told her anything at all. All her issues were caused by someone (usually me) or something else.

Perhaps it's better that way. Because knowing for the caregiver is excruciating, so imagine what it must be like for the LO. This will be a long, hard journey for you both. Blessings to you as you learn to navigate this rocky terrain.


john_n
Posted: Monday, August 19, 2019 3:36 PM
Joined: 8/13/2019
Posts: 4


Thank you everyone again for the responses and shared experiences. I'm sorry, I didn't mean to imply I intended to beat her over the head with her diagnosis; I never even mentioned "Alzheimers" to her the whole time I was home. I was more just curious; somehow in my head I had thought that at least initially ALZ patients were aware of what they were going thru before it progressed too far, but my mom doesn't seem to have had any more than an occasional, vague sense something might be wrong since this started.

So, my first instinct has been to want to (metaphorically and gently) shake her by the shoulders and say, look, whatever you're going through, you know you don't have to be proud and as I'm your son you can talk to me about it so I can help. But if it's not just her pride or denial, if she's not going to be aware and not going to remember, I'll permanently put that aside and focus on the comfort and what treatment is possible angle instead.

Thank you again everyone, and hoping for better days for everyone.


Sunny_1
Posted: Thursday, August 22, 2019 4:36 AM
Joined: 4/8/2019
Posts: 15


to Victoria2020: 

"We're waiters at their table, you don't tell them what's going on in the kitchen, just make the short-term meal nice." - I like that analogy!  
Victoria2020
Posted: Thursday, August 22, 2019 5:43 AM
Joined: 9/21/2017
Posts: 827


grins, thank you Sunny-- can I interest you in  some Tubby Custard?
Eric L
Posted: Thursday, August 22, 2019 10:13 AM
Joined: 12/5/2014
Posts: 1073


My MIL knew there was something wrong with her. She made appointments with her GP and discussed it with him. He initially dismissed it a stress related because my FIL had been recently diagnosed with pancreatic cancer and it wasn't until we wrote the doctor a letter/memo outlining our observations that he took it seriously.

She was fully aware that she had issues at the time of her diagnosis and understood that she had dementia. Her awareness at the time really helped with things like taking her keys away. She got terribly lost one day and even though we're pretty sure she didn't exactly remember getting lost, she was able to hang on to that feeling (fear of being lost). Obviously, she didn't like us taking the keys and even told my BIL "I can still drive, I just have issues with knowing where to go". Even that sort of showed an awareness of her issues. Of course in reality, she had become a terrible driver. My BIL let her drive one day to the grocery store that she had shopped at for almost 20+ years and he said it was a scary experience.

Eventually, like almost all dementia patients, that awareness faded away. It seemed to go away at about the same time her executive functioning and judgment abilities really started to decline. She's had psoriatic arthritis for most of her life. Not only did it seem like she forgot about the dementia, but she also seemed to forget about her physical limitations due to the arthritis.
Army_Vet60
Posted: Thursday, August 22, 2019 10:38 AM
Joined: 6/21/2019
Posts: 361


I already posted my wife's experience.
 
Here's how I handled your question when I had to handle this issue.
 
I adopted a three word strategy to dealing with my wife: "KEEP HER COMFORTABLE."
 
I always kept that phrase in mind when trying to figure out how to deal with any disease related situation. How do I react to respond to her?
 
I decided to never tell her she has Alzheimer's and Parkinson's.
 
If she got frustrated and wondered why she couldn't say or do something correctly and asked me, I would respond "I know you're frustrated. It's hard to remember things sometimes."
 
She would accept that and tell me "Yes it is."
 
With that, I would hold her hand until she forgot why she was angry.
 
More often than not, that strategy worked for me: Keep her comfortable.
 
 john_n wrote:

One big question I've had, both when mom's memory problems started, and since her ALZ diagnosis: Do patients know they have ALZ? Should they know?

 

 


princesskimchi
Posted: Friday, August 23, 2019 11:04 AM
Joined: 8/14/2019
Posts: 18


My grandmother-in-law (GMIL) was diagnosed with AD end fo 2017 and displays anosognosia. It's different for each individual and it's different day to day and minute to minute.

 On Monday I was giving her a spa manicure pedicure (my little excuse to bathe her) when she asked me what was wrong with her grandson, my husband. I asked her what she meant. She told me she didn't know why he wouldn't let her grocery shop on her own. She was referencing an episode we had dealt with the day before. She continued that she didn't have dementia. And she didn't understand why no one let her do things on her own. Then a few minutes later she asked me why she had dementia and if her purse being moved around the house had anything to do with it. And if we should come up with a good place to keep it so her dementia didn't affect it. 

tl;dr Some people know they have it, some don't. I find it best to go along with whatever they say in the moment. Keep them calm and happy. In the beginning we talked about it all the time and tried to explain and answer her questions. But lately telling her only makes her mad. So we just keep her happy and comfortable.


GothicGremlin
Posted: Friday, August 23, 2019 1:01 PM
Joined: 4/7/2019
Posts: 40


Sometimes it's difficult to know what to do. My sister knows she has Alzheimer's, and when she forgets something, or how to do something, she'll say "stupid Alzhimer's". Increasingly though, she won't recognize other episodes that are also Alzheimer's like when her visual perception gets in the way.  At that point I usually just step back to gauge her mood.  If she seems okay, I'll explain what's going on to her.  If she looks like she's becoming agitated or frustrated, I'll just say something calming or validating, like "Ugh, I know this is frustrating.