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Mom knowing something is wrong
carolync321
Posted: Tuesday, December 4, 2018 11:30 AM
Joined: 12/4/2018
Posts: 8


We moved my mother into AL in late August. She is 94 and was completely self-sufficient. She had a brief stay in the hospital which made her to weak and she required 24/7 care, so we decided to move her to AL because she was a huge fall risk. She did have some age-related memory issues, but nothing of any concern.

Just in the last few weeks she's been very depressed and has had mood swings. She was diagnosed with moderate-stage alzheimer's, I'm 300 miles away and unclear on when or how the official diagnosis was made. From what I'm understanding that was based on cognitive testing, which had improved after being treated for a UTI.

I'm just learning about the disease, but I was under the impression that patients are mostly unaware. She absolutely knows something is wrong with her, she has told us about waking up with her mind completely blank, says she's in another time zone, and completely knows she is not herself.

Her moods swing from being her lucid happy self, to being very down and wanting to die, she told me today she's going to stop eating so she will. She's having incontinence issues, but tells me she know when she needs to go, but can't get there in time. We are getting her to a urologist next week to check things out - she's had this issue off and on since August.

Long story short, is it common for Alzheimer's patients to be this aware of their mental state?

Thanks in advance,

Carolyn 

 





Eric L
Posted: Tuesday, December 4, 2018 11:41 AM
Joined: 12/5/2014
Posts: 714


Carolyn - In the very early stages, my poor MIL absolutely knew that something was wrong with her. It wasn't until his disease advanced that she stopped recognizing that something was wrong.

As for the incontinence, it kind of goes hand in hand with the disease. I don't think getting her to a urologist will actually help her. The mood swings also seem to be pretty common and should be treated by a specialist.

But to answer your question, it isn't unlikely that a person in the middlish stages of dementia will be able recognize something is wrong.
carolync321
Posted: Tuesday, December 4, 2018 12:05 PM
Joined: 12/4/2018
Posts: 8


Thank you. After reading more, I have to agree with you on the urologist, but last week she told me she was having some abdominal pain and thought she had to 'go'. She's had kidney stones in the past, so we want to double check things, just in case.

What sort of specialist should we look into for her mood swings? There is a psychiatrist on staff that comes around once a month, but my brother has been asking for months for an appointment and just got one.

It's all happened so fast, part of it I'm sure is denial on my part, but another part of me wonders if there is something else. There was discussion between my brother and the physician's assistant on getting a cat scan done. I think that is warranted. My brother who is local to her, and her POA, isn't sure when/who diagnosed her. The medical staff wasn't even aware she has incontinence issue even though the care staff is providing her with depends. The cynic in me thinks they look at a 94 year old woman who does bad on a cognition test and just decides she has dementia/alzheimers. (Yes, more possible denial on my part)

I absolutely hate that she is so depressed where she is. They have added another anti-anxiety med and then plan to start Aricept. She's super sensitive to medications, so they don't want to start them together.

Are there home healthcare therapists like occupational therapists? We were paying out of pocket for an OT - which she loved until the last few weeks.

 Sorry for the rambling, I start typing and can't stop.  


His Daughter
Posted: Tuesday, December 4, 2018 12:12 PM
Joined: 6/25/2014
Posts: 2243


Hi Carolyn,  when my father was in the early stages, he also knew that something was going wrong.  He had been hospitalized for flu and dehydration, and talked to his doctor about it.  Our doctor did the paper test.  Dad scored 22/30.  Not great, but also not horrible.  But the fact that Dad talked with the doctor about memory loss, clearly shows that he was aware (at that time) that something was happening with his brain, and he was concerned.

It's later in the disease process when they are totally unaware that anything is wrong.
carolync321
Posted: Tuesday, December 4, 2018 12:23 PM
Joined: 12/4/2018
Posts: 8


His Daughter wrote:

Hi Carolyn,  when my father was in the early stages, he also knew that something was going wrong.  He had been hospitalized for flu and dehydration, and talked to his doctor about it.  Our doctor did the paper test.  Dad scored 22/30.  Not great, but also not horrible.  But the fact that Dad talked with the doctor about memory loss, clearly shows that he was aware (at that time) that something was happening with his brain, and he was concerned.

It's later in the disease process when they are totally unaware that anything is wrong.
Thank you. I had heard my mother scored 50% when they gave her the paper test, and she did better after her UTI was treated, but unclear of the later score. She had been aware for a bit that she has trouble finding the right words. I really believe 'some' of her issues are depression, she told me right before things went down hill how lonely she is.

SelEtPoivre
Posted: Tuesday, December 4, 2018 12:52 PM
Joined: 3/8/2018
Posts: 566


Hi Carolyn,

When my mom was in early/mid stage, she would often say "I don't feel like myself" and that she doesn't like the life she has now. I believe it was a combination of Alz and untreated depression. All I could do was put my arms around her and tell her "I know this is hard, I love you and I'll always be right here next to you" and validate her feelings.

Mom's been in MC since mid-September, and they're starting her on Effexor to help her mood after weaning her off seroquel from her hospital stay.

Have you read The 36-Hour Day, and/or Naomi Feil's Validation book? I found both very helpful; The 36 Hour Day is as close to an Alzheimer's User Manual as we have


carolync321
Posted: Tuesday, December 4, 2018 2:03 PM
Joined: 12/4/2018
Posts: 8


SelEtPoivre wrote:

Hi Carolyn,

When my mom was in early/mid stage, she would often say "I don't feel like myself" and that she doesn't like the life she has now. I believe it was a combination of Alz and untreated depression. All I could do was put my arms around her and tell her "I know this is hard, I love you and I'll always be right here next to you" and validate her feelings.

Mom's been in MC since mid-September, and they're starting her on Effexor to help her mood after weaning her off seroquel from her hospital stay.

Have you read The 36-Hour Day, and/or Naomi Feil's Validation book? I found both very helpful; The 36 Hour Day is as close to an Alzheimer's User Manual as we have

I have not read that. I will check it out. We are really hoping the meds help, the aides are having a hard time getting her out of bed each day.

gubblebumm
Posted: Tuesday, December 4, 2018 5:14 PM
Joined: 7/12/2017
Posts: 851


I am not sure what we expect from people who are 94 years old, their friends are dying, they know its around the corner...I ask this with all respect, but frankly I understand why she might be sad...do we expect all chipper and perky all the time at that age?  There are aches and pains and hard of hearing and vision issues all sorts of stuff they can't describe


Do we want them all chatty for our benefit to make US feel better?  Let her be, keep her company but don't pressure her, she's actually pretty amazing sounding to me


Mimi S.
Posted: Tuesday, December 4, 2018 7:04 PM
Joined: 11/29/2011
Posts: 6643


Hi Carolyn,
Welcome to our world. I'm so glad you found our site.

 

Your family absolutely has the right to know the source of the diagnosis. From your librry ask for anything by Doraiswamy and Gwyther. It will show the stepsthat must be taken for any sort of a reliable diagnosis. 

 

Many of us PWD (people with dementia) do understand our diagnosis.

 

Naomi Feil has written a book on her Validation Method. Do ask your librarian for a copy. it's not an easy read, but well worth the time. I do wish Assisted Living staff and also memory Cre staff were all trained in this method.
The 36 Hour Day is an excellent reference source, but in my opinion, is not meant to be read cover to cover.
Aricept is usually given immediately after a diagnosis of Alzheimer's and some other dementias. There as some dementias it is not given for, thus the need for a good diagnostic procedure.  Sometimes Aricept causes GI problems. A lactose free diet worked for me. If nightmare, giving in morning often will be OK. 
What is ALF doing to try to prevent falls? Does she need a walker for stability?
Do feel free to call our help line 1-800-272-3900 and chat .

 


gubblebumm
Posted: Tuesday, December 4, 2018 9:17 PM
Joined: 7/12/2017
Posts: 851


She is 94 years old!!! Can't she just be?  Oh walk around, Oh cheer us up and be chipper for us?  Imagine being 94, and everyone else wants you to be 65, must be exhausting
harshedbuzz
Posted: Wednesday, December 5, 2018 4:22 AM
Joined: 3/6/2017
Posts: 1032


carolync321 wrote:

Thank you. After reading more, I have to agree with you on the urologist, but last week she told me she was having some abdominal pain and thought she had to 'go'. She's had kidney stones in the past, so we want to double check things, just in case. 

I am sorry you have reason to seek us out. 

It's generally a good idea to check out physical complaints. My dad complained on and off about pain from ribs he had broken in a fall. His PCP checked him out; there were no broken ribs and he was complaining a year after the fall. When reading a report from a chest CT scan a few weeks later I happened on a reference to his gall bladder. This gall bladder had been removed in 1982- turns out there was some tissue left and stones in one of the ducts. We tweaked his diet and things improved for him. 

What sort of specialist should we look into for her mood swings? There is a psychiatrist on staff that comes around once a month, but my brother has been asking for months for an appointment and just got one. 

A geriatric psychiatrist treats this sort of thing. Dad's geri-psych was a critical part of his medical team. Dad had some underlying mental health issues layered on top of the anxiety and depression that came with his dementia. Early on, dad was clearly aware he wasn't as "losing it" as he put it. I have a video, made 7 months before he passed, in which he is describing the day of reckoning to come when he gets his head square and figures out what I did with all his money because even with his mind being blank he's 10 times smarter than me on my smartest day. 

It's all happened so fast, part of it I'm sure is denial on my part, but another part of me wonders if there is something else. There was discussion between my brother and the physician's assistant on getting a cat scan done. I think that is warranted. My brother who is local to her, and her POA, isn't sure when/who diagnosed her. 

I wonder if the call was made while she was hospitalized. They may have had a consult done by neurology. Her PCP should have some idea about who/when the diagnosis was made. Unfortunately, many elderly patients do develop some sort of hospital induced delirium/psychosis which would impact how they present and would do on cognitive testing. Dad improved a bit out of the hospital but over time he started to lose more cognition at home.  I'm not sure of the differences in the various scans, but when they suspected a brain lesion for my mom (she suddenly lost vision in one eye), the doctors ordered an MRI. Dad's neurologist ordered a PET scan with glucose. 

The medical staff wasn't even aware she has incontinence issue even though the care staff is providing her with depends. The cynic in me thinks they look at a 94 year old woman who does bad on a cognition test and just decides she has dementia/alzheimers. (Yes, more possible denial on my part) 

In terms of cynicism, given that you aren't local, have you ever spent some 24/7 time with mom for a week or so before she was placed? My parents weren't local to me, I would generally visit them at the beach during the summer for a couple days each month. It was about all of dad I could handle and he was kind of able, with mom's help, to pass for OK. In retrospect, his car looked like it had been in a demolition derby, the house was falling apart and he was crazy suspicious about things but mostly he seemed OK. Then mom got really sick while they were in Florida and I flew down. I spent a week with dad in his natural state- i.e. not supported and scaffolded by my mom. It was a real eye-opener. 

I absolutely hate that she is so depressed where she is. 

This is the really hard part. And it may not be entirely fixable. She's had a lot of loss given her age- the sadness of losing people dear to her, the indignity of losing her independence and her own home. It is kind of appropriate that she'd feel the loss keenly. It can be difficult to parse through what is depression and what is dementia in the very old. A psychiatrist can help here. But be aware that age is the single greatest risk for dementia- among those 85+ and living in the community, the numbers are close to 50%. 

They have added another anti-anxiety med and then plan to start Aricept. She's super sensitive to medications, so they don't want to start them together.


I agree that one at a time makes more sense. I'd pay close attention to which class of meds they choose. Eventually, dad's psychiatrist had him on 3 psychoactive medications. By combining them, he was able to keep the individual doses lower and avoid side effects without sedating him. 

Are there home healthcare therapists like occupational therapists? We were paying out of pocket for an OT - which she loved until the last few weeks. 

What was the OT doing with her? You might be able to find a private HHA to come and do prescribed activities with her at a lower rate. Dad got OT and PT in house when he went to his MCF. Medicare picked up the cost. 

 Sorry for the rambling, I start typing and can't stop.  



carolync321
Posted: Wednesday, December 5, 2018 8:13 AM
Joined: 12/4/2018
Posts: 8


gubblebumm wrote:

I am not sure what we expect from people who are 94 years old, their friends are dying, they know its around the corner...I ask this with all respect, but frankly I understand why she might be sad...do we expect all chipper and perky all the time at that age?  There are aches and pains and hard of hearing and vision issues all sorts of stuff they can't describe


Do we want them all chatty for our benefit to make US feel better?  Let her be, keep her company but don't pressure her, she's actually pretty amazing sounding to me

No, I don't expect her to be chatty for my benefit. I'm okay with her being blue and griping about her aches and pains, but saying she is going to stop eating so she dies is another thing. In the past year she's said she's made peace with God as is ready to go - I'm fine with that as well. As a daughter, I would like her to be happy, which she was not too many weeks ago, not having her in tears and praying to die. 

carolync321
Posted: Wednesday, December 5, 2018 8:29 AM
Joined: 12/4/2018
Posts: 8


harshedbuzz wrote:
carolync321 wrote:


I wonder if the call was made while she was hospitalized. They may have had a consult done by neurology. Her PCP should have some idea about who/when the diagnosis was made. Unfortunately, many elderly patients do develop some sort of hospital induced delirium/psychosis which would impact how they present and would do on cognitive testing. Dad improved a bit out of the hospital but over time he started to lose more cognition at home.  I'm not sure of the differences in the various scans, but when they suspected a brain lesion for my mom (she suddenly lost vision in one eye), the doctors ordered an MRI. Dad's neurologist ordered a PET scan with glucose. 

That very well could be. When she entered the hospital last she was extremely delirious, she perked up in the rehab facility, and a few weeks of more OT and PT at the assisted living facility she was back to her old self.

In terms of cynicism, given that you aren't local, have you ever spent some 24/7 time with mom for a week or so before she was placed?

I did. Last July, a week or two prior to her last hospitalization, I stay with her for a week. The biggest thing I noticed were her issues with finding the right words. She would be foggy in the morning, but in day-today activities she was completely herself. A mental decline was noticed, but, at her advanced age it didn't seem out of the ordinary. Her physical decline was more obvious.


This is the really hard part. And it may not be entirely fixable. She's had a lot of loss given her age- the sadness of losing people dear to her, the indignity of losing her independence and her own home. It is kind of appropriate that she'd feel the loss keenly. It can be difficult to parse through what is depression and what is dementia in the very old. A psychiatrist can help here. But be aware that age is the single greatest risk for dementia- among those 85+ and living in the community, the numbers are close to 50%. 
 

It is. She lived in a wonderful senior community and had friends and a nice routine. I know the loneliness is tough for her and she misses her friends, her weekly outings to the grocery store, and Sunday's at church with my brother.
 
 

  

What was the OT doing with her? You might be able to find a private HHA to come and do prescribed activities with her at a lower rate. Dad got OT and PT in house when he went to his MCF. Medicare picked up the cost.  

 

The OT had mainly been doing PT with her. The Medicare coverage stopped, so we were paying out of pocket. My mother loved her until recently, and told her she didn't want her coming back. She had loved doing all the exercises and was determined to get herself strong and perhaps free of her walker, she had loved seeing the exercises work.

Thank you so much for your details response. It was very helpful and much appreciated.


carolync321
Posted: Wednesday, December 5, 2018 8:34 AM
Joined: 12/4/2018
Posts: 8


Mimi S. wrote:
Hi Carolyn,
 
Welcome to our world. I'm so glad you found our site.
 

 

Your family absolutely has the right to know the source of the diagnosis. From your librry ask for anything by Doraiswamy and Gwyther. It will show the stepsthat must be taken for any sort of a reliable diagnosis. 

 

Many of us PWD (people with dementia) do understand our diagnosis.
 

 

Naomi Feil has written a book on her Validation Method. Do ask your librarian for a copy. it's not an easy read, but well worth the time. I do wish Assisted Living staff and also memory Cre staff were all trained in this method.
 
The 36 Hour Day is an excellent reference source, but in my opinion, is not meant to be read cover to cover.
 
Aricept is usually given immediately after a diagnosis of Alzheimer's and some other dementias. There as some dementias it is not given for, thus the need for a good diagnostic procedure.  Sometimes Aricept causes GI problems. A lactose free diet worked for me. If nightmare, giving in morning often will be OK. 
 
What is ALF doing to try to prevent falls? Does she need a walker for stability?
 
Do feel free to call our help line 1-800-272-3900 and chat .
 

 

Thank you. I will definitely grab a copy of the book. She is using a walker for stability. The staff does seem to be checking in on her regularly, at a bare minimum they come in at meal times and in the evening to give her medication. When she first entered they found her on the floor 3 times in one day; luckily she is much stronger now and a pro with her walker.

terei
Posted: Wednesday, December 5, 2018 9:00 AM
Joined: 5/16/2017
Posts: 127


I would also recommend the book Being Mortal which is basically about allowing people

to die on their own terms.


Mike&BrendaTX
Posted: Friday, December 7, 2018 5:12 AM
Joined: 7/10/2017
Posts: 366


carolyn,

My wife (now in late stage 7) has always shown remarkable insight into having this disease.  At one point in stage 5, she sat there crying and said, "I have the same thing my mother had [true], but she had it worse than me.  She couldn't get out of bed."

My wife has declined significantly in the past month, starting to fall regularly due to balance problems.  She hasn't been able to walk at all for the past three or four days, due to not only balance issues, but general weakness. But she still knows who I am and that I'll take care of her, so it is possible that persons with this disease can be aware quite far into the stages.

Mike


feudman
Posted: Friday, December 7, 2018 6:45 AM
Joined: 6/5/2014
Posts: 1179


Welcome Carolyn...

From what I've learned, I agree with the consensus; most dementia sufferers have some degree of awareness in the early stages, and can be very adept at hiding their shortcomings around strangers (this can create the suspicion that their dx is mistaken). Certainly, this realization is not a cause for celebration, and it often causes anxiety (ranging from sadness or anger to suicidal thoughts). Some folks never lose this awareness, but as their dementia progresses, at some point, many will develop anosognosia, meaning they become convinced that they are fine.

As for the incontinence, as others have said, it may be a waste of time to have this checked, but I would, just in case. There are meds for treating "not being able to get to the bathroom quickly enough."

Do read the suggested books and the threads and other info here...the more you know, the better a caregiver you can be. Best wishes.


NC caregiver
Posted: Friday, December 7, 2018 7:11 AM
Joined: 2/7/2018
Posts: 660


My Mom is stage 6 & is sometimes aware that she is having problems with her thinking, but other times seems unaware.  She talks about waking up & not knowing where she is and having a feeling like she needs to do something but not knowing what it is.   She doesn't recognize family members but doesn't realize that.   She will acknowledge that she needs help with daily activities & that she has forgotten how to cook . But she thinks her husband is live, people are stealing from her, etc even though those things are not true.  And she doesn't know that Alzheimer's is what she is dealing with, even though she has been told that she has it.   Mom usually remains fairly content now that she lives with us.  When she was living alone in early stages she had a lot more agitation & anger.
Mimi S.
Posted: Friday, December 7, 2018 9:56 AM
Joined: 11/29/2011
Posts: 6643


just my thoughts on: you are 90; forget it.

I now living an ALF where just about all residents are in their 80s and 90s. I play bridge with an almost 100 year old lady. She carries aROUND THE DAILY LIST OF ACTIVITIES. Yes, some are couch potatoes but MANY ARE STILL VERY ACTIVE BUT WITH REASONS FOR BEING HERE. So please don't judge merely by age.

 
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