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Old 12-06-2011, 06:43 PM   #1
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Moderate Dementia... or "really fine"?

Hello and greetings to all board members, I am new here.

I along with my sister have been helping my aunt who has been declining over the past few years with dementia and a few physical ailments as well.

Short version: After two years living at home with assistance after a diagnosis of mild dementia, my Aunt took a serious turn for the worse mentally, fell at home and broke her collarbone. We took this as the opening to help her transition to an assisted living or long term care setting, which we think she really should have been for a while, since she needed 3 - 6 months of rehab to begin with, it seemed like the right time.

After a four week evaluation at her current facility (medical, psychiatric, psychological, social and occupational) and an evaluation by an independent geriatric care manager (credentials MPS, TN, CCM, CMC), there is a consensus on her diagnosis of moderate dementia (undetermined complicated by vascular) including delusions, paranoia and anxiety as well as occasional hallucinations. They are treating her in various ways including medication and she is actually doing much better in the nursing home where she does not have the stress of trying to keep up with daily living and more companionship. Her delusions used to be worse at home.

We know - intellectually, we know - that periods of lucidity are common. But emotionally and psychologically we are finding it hard to deal with them and we are starting to wonder if we are going crazy.

One day she is perfectly fine - lucid, making sense, and back to her old self, then the next she thinks - really, really thinks, the she is living in a bank on top of the vault and people are coming in on payday to cash their checks.

One morning I will get calls from them saying that she is yelling at and hitting the doctor and becoming nearly violent because he wants to give her an X-ray to see if her broken bone is healing well and that same afternoon she is laughing and talking with the aides.

One day she is crying that she hates it there and they don't feed her and they hang her on the cross and let her sit in the dark all night and the next day she says she loves it. One day she wants to move and in the evening she wants to stay.

To make matters worse, the others who visit never seem to catch her on a bad day and they all think she is "really fine" and "just a little nervous"! Somehow just saying, yes but yesterday she thought she was living in a bank and hitting the doctor doesn't impress them. They think "the elders just get ornery" and they think we are exaggerating!

We know - deep down, we do - that all the behavior I am describing is part and parcel of the dementia thing.

But we are having trouble coping with these wide vacillations and I would like to invite your thoughts, comments and opinions.

Thank you kindly in advance

 
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Old 12-07-2011, 01:35 PM   #2
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Re: Moderate Dementia... or "really fine"?

hello suzy, and welcome,,,, first of all big hugs to you for caring enough about your aunt to realize what she needed. I am going though a similar thing with my mom at the moment, the outbursts, the yelling and then a complete turn and there sits the sweetist little dolly in the hospital, they other night she was caring on so bad that some other people visiting other patients were crying for her.... geeze, it does get bad doesn't..our doctor is in the process of trying to find the happy cocktail of meds to keep my mom stress free all day instead of them administrating something really heavy when she crashes and burns. The people of this board are the greatest, just know that you are not crazy and that you are not alone...

hugs judy.

 
Old 12-07-2011, 04:27 PM   #3
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Re: Moderate Dementia... or "really fine"?

welcome, my mom did the same thing. i have no explanation for the eratic behavior. when my mom had visitors she almost became normal. when they left-the dementia totally kicked in. watch the meds she is on would be my advice for now.

 
Old 12-08-2011, 07:20 AM   #4
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Re: Moderate Dementia... or "really fine"?

You have described perfectly what my Mom's behavior was like for the past several years. You are not going crazy, it is the disease. Sometimes, others don't want to accept that Dementia is doing what it is doing to your loved one. I know my Aunt, my Mom's sister, never seemed to see the screwball behavior when she visited. Yet, it was part and parcel of my daily life. Comfort yourself, and know you are not going crazy.

 
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Old 12-08-2011, 08:20 AM   #5
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Re: Moderate Dementia... or "really fine"?

Yes, they all do that in the mid stages. There is an explanation. This disease doesn't come and go but their ability to compensate for the inabilities does. The brain is an amazingly resilient place. Eventually there will be no way to compensate and you will see the decline constantly.

Mom's doctor explained that it's like a filing clerk sitting there sticking memories in and taking memories out. She does an excellent job and then those tangles and plaques hamper her work. So she starts losing memories that need to be stored. She gets some in but not all. Yet she can take out those old memories that are already there. Many times their lucidity is attached to old memories. As the disease gets worse the filing clerk gets less and less filed and starts having trouble taking out what is there. Eventually she is totally ineffective. This is why Mom does ok at home (where she has long term memories to work from) but seems to take a dramatic decline when you move her.

Then you have the brain compensation. There are more than one path in the brain that accomplish a function. That is why learning new things is important. That is what creates the new and various paths our brain uses. So if you want to do something and the brain fires off in path one that is blocked, you can't do it. But if you want to do the same thing later and the brain fires off in path two, you can get it done. Eventually all paths are blocked and the inability becomes consistent.

It combines to create a situation where we do doubt our own knowledge. You can't look at a good moment or a good day and doubt what you know. You have to look at the bad days and the bad moments, prepare for the worse, and know you are doing what is right. It is the nature of the disease! So hang on to what you know and don't let the good days create doubt.

Love, deb

 
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Old 12-08-2011, 11:23 AM   #6
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Re: Moderate Dementia... or "really fine"?

Thank you so much for your reply.

I know the behavior is typical but hearing the stories of others really goes a long way to assure us that we are neither alone nor crazy!

Thank you!!!!!

They are working on her unique calm and happy cocktail
Quote:
Originally Posted by jagsmu View Post
hello suzy, and welcome,,,, first of all big hugs to you for caring enough about your aunt to realize what she needed. I am going though a similar thing with my mom at the moment, the outbursts, the yelling and then a complete turn and there sits the sweetist little dolly in the hospital, they other night she was caring on so bad that some other people visiting other patients were crying for her.... geeze, it does get bad doesn't..our doctor is in the process of trying to find the happy cocktail of meds to keep my mom stress free all day instead of them administrating something really heavy when she crashes and burns. The people of this board are the greatest, just know that you are not crazy and that you are not alone...

hugs judy.

 
Old 12-08-2011, 11:28 AM   #7
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Re: Moderate Dementia... or "really fine"?

Thank you so much for your reply.

It means a lot to me to know that we are not alone in what we are seeing!

The psychiatrist did explain it in scientific terms, and the pscyhologist said it is not unusual at all for people to be on their best behavior with guests or visitors, she said she sees it all the time along with a flare-up after the visitors leave.

We are watching her medications as they try to tweak up a good combination that works for her.

Again, thanks for your kind response.

Quote:
Originally Posted by debbie g View Post
welcome, my mom did the same thing. i have no explanation for the eratic behavior. when my mom had visitors she almost became normal. when they left-the dementia totally kicked in. watch the meds she is on would be my advice for now.

 
Old 12-08-2011, 11:32 AM   #8
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Re: Moderate Dementia... or "really fine"?

Thank you very much for taking the time to reply!

I really appreciate it!

In addition to reassuring my sister and I, it also raises an excellent point about others not wanting to accept the situation. Some people have a lot of trouble accepting a dementia diagnosis or really accepting the nature of the disease.

That said, I am sympathetic to the fact that others who do not see the behavior can find it hard to accept the diagnosis but on the other hand, the truth is if they spent enough time with the person (meaning, a long enough time and consistently), they would certainly see the behaviors too.

We kept a log at home and they keep detailed records at the facility of all the incidents so no one could ever question whether they actually occurred.

Again, thanks so much for your kindness in replying to me!


Quote:
Originally Posted by gaylec View Post
You have described perfectly what my Mom's behavior was like for the past several years. You are not going crazy, it is the disease. Sometimes, others don't want to accept that Dementia is doing what it is doing to your loved one. I know my Aunt, my Mom's sister, never seemed to see the screwball behavior when she visited. Yet, it was part and parcel of my daily life. Comfort yourself, and know you are not going crazy.

 
Old 12-08-2011, 11:42 AM   #9
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Re: Moderate Dementia... or "really fine"?

First, thank you so much for taking the trouble to post such a detailed reply.

I cannot tell you how much it means to me.

What you wrote is essentially what the psychiatrist explained to us. He said she currently still has ability to compensate and that the activities they have selected for her, etc. could help her try to hang on to them.

He also said that her tendency to confabulation was another example of trying to compensate.

He also said that any window of opportunity to move her without it being detrimental is closing fast, because of the adjustment issues.

I fully agree that one simply cannot be lulled by good days or good moments - we know we have to understand the fullness of this disease and make the best decisions.

It is the emotional side we were having issues with because when you see them worse you come to terms with it and think you are ok with it then you see them better and even tho you know it is just a good moment, the next time a bad one comes you have to come to terms with it all over again.

We now realize we have to see the good moments as special but not to let them put us on the seesaw again.

And i readily admit that being the one who saw her the most, it does bother me that others could even question this diagnosis when confronted with the preponderance of evidence, but in the larger scheme of things, that doesn't matter and so i just have to let it go.

I thank you again for listening and for your thoughtful reply.

 
Old 12-08-2011, 01:14 PM   #10
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Re: Moderate Dementia... or "really fine"?

Confabulation is a word I love to explain what they do. One thing I noticed with Mom, if you don't know the whole truth then you can be duped by their ability to create a story out of what they do remember. Little bits of truth weaved into a story with blank spots filled in by fabrication so it makes sense to them.... confabulation! That's where you get the "X stole my X" from. She knows she saw it and she knows somebody was at her house and now she can't find it.... so that person had to have taken it!

Mom could be on her best behavior for guest and then fall apart totally. It seemed to take so much out of her to keep up appearances. So they see the best and you get left with the worst. When a situation got too confusing for Mom and she couldn't handle it any more she would get "sick". I remember a weekend she stayed on the couch sick all weekend. When the company left she got up and wanted to walk around the block. AH HA!! She knew she couldn't cook for all those people any more so she went to bed!! You have to laugh!

Moving adjustment is a major problem except in the early stages. I can't tell you how many times I heard, while working in long term care,... "Mom was fine at home and I don't know why she can't do anything in her apartment". It is because at home she had long term memory to help her and here she doesn't! She doesn't have the ability to learn (which takes short term memory) so each day is new and scary for a long time until those little bits that she is remembering form a memory that makes her secure.

Now, as for all those "others" that just don't get it. I have learned over these many years of dealing with dementia that you can't let what they say color what you know. They are out of the loop, in denial, or don't want to see. All you can do is tell them the truth, give them reality, and then it is up to them to deal with their own emotional baggage. You have Mom to worry about! I had naysayers when I knew Mom had dementia. Even after her diagnosis there were those that knew it couldn't be. Many shied away said she was fine. Some accepted the diagnosis but had no clue what it would do or had done to her abilities. "She's fine".... I heard that too many times! Yes, it does make us doubt ourselves in the moment but when our brains kick in we know we are right. I, like you, was the one that was with Mom more than anybody else so I had to trust myself and what I knew! Remember, you can't fix the way anybody else thinks. You can only control how you deal with their thoughts

It sounds like you have a great psychiatrist that understands dementia. They are few and far between and you are so very lucky to have him. I do hope you find the right tweak in the medication. It makes all the difference. Mom had extreme emotional distress before we found the right cocktail. Now we have a chemical contentment but she is still as functional as she can be with her level of the disease. It's a fine line but well worth searching out. Kudos to you for all you are doing for her and for your understanding

Love, deb

 
Old 12-09-2011, 07:31 AM   #11
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Re: Moderate Dementia... or "really fine"?

Very astute post, thanknyou!

The psychiatrist has a special interest or specialty in this area and more of a people person than many.

The calmness and certainty and details of the confabultions can certainly convince people.

They find my aunt a bit of a curiosity because she sometimes actually verbalizes a seeming understanding that she is making things up by saying she is " writing. a story "

For example, she will say X happened and I did not like it but I need more time to write a story about why it happened. Or, X happened and I said it was because of ABC but, C does not really sound too good. I am going to write a new story about C that sounds better.

And yes about the visitors - certain people she wants to be at her best and will not act up, others get the brunt. In her case anyone who brings a piece of chocolate or a bonbon gets the good treatment. If you come empty handed you are in for it :-)

And YES if there are people she does not want to deal with she plays sick or even dead or - sad or funny or maybe both - she does a very unsettling imitation of someone much more advanced (mouth drooped open, arms hanging, occasional moaning or crying out, eyes rolled back). When the shocked and unsettled person departs quickly she instantly springs back to herself. We caught it when someone ran out and reported to the nurse that she may have a had a stroke! She then told the nurse that she did not like the visitor and so she acted like "one of those really pathetic ones" because their visitors never stay very long!!!!

Talk about compensation!!

Yes, the human brain is an amazing thing indeed.

Seriously tho we arenow wrestling with the debate is a move to a fancier or nicer place (hers is 5 star) but rather plain really in her best interest or is it reallynjust to mkae US feel better

Quote:
Originally Posted by Gabriel View Post
Confabulation is a word I love to explain what they do. One thing I noticed with Mom, if you don't know the whole truth then you can be duped by their ability to create a story out of what they do remember. Little bits of truth weaved into a story with blank spots filled in by fabrication so it makes sense to them.... confabulation! That's where you get the "X stole my X" from. She knows she saw it and she knows somebody was at her house and now she can't find it.... so that person had to have taken it!

Mom could be on her best behavior for guest and then fall apart totally. It seemed to take so much out of her to keep up appearances. So they see the best and you get left with the worst. When a situation got too confusing for Mom and she couldn't handle it any more she would get "sick". I remember a weekend she stayed on the couch sick all weekend. When the company left she got up and wanted to walk around the block. AH HA!! She knew she couldn't cook for all those people any more so she went to bed!! You have to laugh!

Moving adjustment is a major problem except in the early stages. I can't tell you how many times I heard, while working in long term care,... "Mom was fine at home and I don't know why she can't do anything in her apartment". It is because at home she had long term memory to help her and here she doesn't! She doesn't have the ability to learn (which takes short term memory) so each day is new and scary for a long time until those little bits that she is remembering form a memory that makes her secure.

Now, as for all those "others" that just don't get it. I have learned over these many years of dealing with dementia that you can't let what they say color what you know. They are out of the loop, in denial, or don't want to see. All you can do is tell them the truth, give them reality, and then it is up to them to deal with their own emotional baggage. You have Mom to worry about! I had naysayers when I knew Mom had dementia. Even after her diagnosis there were those that knew it couldn't be. Many shied away said she was fine. Some accepted the diagnosis but had no clue what it would do or had done to her abilities. "She's fine".... I heard that too many times! Yes, it does make us doubt ourselves in the moment but when our brains kick in we know we are right. I, like you, was the one that was with Mom more than anybody else so I had to trust myself and what I knew! Remember, you can't fix the way anybody else thinks. You can only control how you deal with their thoughts

It sounds like you have a great psychiatrist that understands dementia. They are few and far between and you are so very lucky to have him. I do hope you find the right tweak in the medication. It makes all the difference. Mom had extreme emotional distress before we found the right cocktail. Now we have a chemical contentment but she is still as functional as she can be with her level of the disease. It's a fine line but well worth searching out. Kudos to you for all you are doing for her and for your understanding

Love, deb

 
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Old 12-09-2011, 02:50 PM   #12
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Re: Moderate Dementia... or "really fine"?

I actually got a good chuckle from your Mom's antics. She sounds like my Mom in so many ways. The day she was "sick on the couch", I walked back in and she popped out her head asking of "they" were gone. I assured her they were and she was up like a flash. I had to laugh! I can just see your Mom acting out to get "those people" to leave. I love the way your Mom processes what she can remember and what she knows.... then has to come up with a valid reason for what doesn't make sense to her. It only validates that they don't lose their intelligence. They are working with a deficiency in processing. They take what they can comprehend and make it rational to them. That is why their reality is as real to them as our is to us. They can be so convincing because they believe what they are saying! It IS their reality. I find it all fascinating.

As for the move... uh huh I know your debate. I have been in much the same debate myself. Mom is in a very nice facility that was top rated (until some administrative changes). Do I fight the fight to make sure she gets the best care or do I move her to another facility? Would the move benefit me or Mom? Constant monitoring and discussions has kept her care where it needs to be but would it be better else where or am I just wanting an easier road? Mom has been in her current facility for over 2.5 years. She is at home there. Do I disrupt her familiar security? Yep, I wrestle with this one daily but for now I have opted to wait and see... leave her where she is and keep the pressure on the facility to make sure her care what it should be. My salvation is some of the care staff. Mom's first and second shift care givers, five days a week, are excellent! So it's nights and weekends I have to stay on top of.

I have said before and I will always say it is not the wallpaper and flowers that make a facility. I have seen some spectacularly appointed facilities that I would not put my Mom in. Bottom line it is the care staff that makes the difference. Plain with excellent care staff is much better than well appointed with less attentive staff. So if you are considering moving her check out the staff. Stop by and hang out at different time of the day. Talk to resident's family members in the parking lot when they are free to talk. Make sure you are going to something better. Then consider how long Mom has been where she is, how well she is adjusted, how secure she feels, and how happy she is. Know that any move is going to be an iffy proposition at best. If you do move her make sure it is for better care, or because she is not happy where she is, rather than it looks nicer

Love, deb

PS... hang on to your psychiatrist. Good ones that understand this disease are hard to come by. We went through several before I finally arrived at the one who finally found the right cocktail for Mom and helped her find contentment while maintaining functionality. I will forever be indebted to Mom's psych!

Last edited by Gabriel; 12-09-2011 at 02:52 PM.

 
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Old 12-09-2011, 03:43 PM   #13
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Re: Moderate Dementia... or "really fine"?

I am a bit late here but have to chime in. My dad, for a long time, seemed sharp and "with it" to most people much of the time. There were times when I would tell my doctor (also his primary doctor) some of the ways dad was declining and I sometimes felt as though the doctor might think I was making it up in some twisted geriatric Munchaussen syndrome way! My siblings often said he sounded fine on the phone. When I told them he could not dial a phone to save his life, they had to come see for themselves, which was actually helpful to me.

If having other people acknowledge/recognize the degree of the problem is important (and it often is) my suggestion is to tell those people to have a NON directed conversation with your mom for more than 30 minutes. Meaning, don't ask questions or direct the conversation in any way. That way, the patient is more likely to wander into nonsense.

Even our pastor, who visited my dad regularly, did not seem to see what we saw. At dad's funeral last weekend (he was almost 96) the pastor spke of our dad's love of walking, and how when he would go visit him at the assisted living, he often could not find him! My five siblings and I almost erupted with laughter right there in the service, knowing that while he was still walking this past summer, he wasn't staying fit by walking the grounds. He could never find his room!

Best of luck to you. If you can find a venting partner to laugh with when appropriate, I recommend it, as it sure beats crying. At least sometimes.

 
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Old 12-12-2011, 08:30 AM   #14
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Re: Moderate Dementia... or "really fine"?

Yes, it sounds like their behavior is very similar!

As I continue to read and talk to people, and learn more about demential and vascular dementia in particular, it is so clear that she is more or less a textbook case

Re her moving, right now I am taking it completely OFF the table. I chose this one precisely because it was five stars on all the measures and since we did not know what condition she would end up with now, (I certainly know where she is header long term), i did not want to take any chances on health or quality measures which end up being more important. When I met with them, they seemed genuinely interested in her as a person and in her case, and in our family. They are giving her a lot of attention and most importantly, she repeatedly says that she does not want to move, she feels safe there because it is a bank :-), she likes the aides and it feels like home away from home.

And, as you say, I am very leery of switching psychiatrists.

So I think moving her would be more about US than about HER.

The other places, the "fancier" ones have lower ratings on health issues and quality measures - I would not move her to someplace LESS good just because it was fancier. In our area, I notice the "fancier" ones - and wow, are some of them fancy! - ALL have lower ratings. I suspect a lot of people get wowed by the accommodations and don't bother to check the two star quality measures and health issues ratings. Really, one by us looks like The Waldorf but has two stars on both those areas.

Your situation sounds more complicated if the care is going downhill. I think if I spotted the care declining I would start by fighting it out with them. They could be having some organization issues causing them to fluctuate and ultimately it does everyone a service when some of us insist on better care. If you Mom starts to really want to leave and you can't make a dent on keeping things up, then you can think about changing!

 
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Old 12-12-2011, 08:37 AM   #15
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Re: Moderate Dementia... or "really fine"?

Oh thank so SOOO much for chiming in. It was not too late at all actually!!

After I read your post, I followed your suggestion and suggested to one of the non-believers to have that NON directed conversation. Within mere minutes of non-guided conversation, my poor aunt was talking in infinite confabulated detail about her various delusions, about her job (she retired 30 years ago) , about catching the bus, about the vault downstairs and various other things.

The non-believer was converted - actually they were really upset because they had never seen it before and were flabbergasted and crying.

"Why didn't you tell me?" they said. I replied I HAVE been telling you for TWO YEARS. I HAVE been telling you the recent diagnosis, what did you think I was talking about?

But, seeing is believing and your suggestion was MOST helpful!

Thanks again!




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Originally Posted by Huskapet View Post
I am a bit late here but have to chime in. My dad, for a long time, seemed sharp and "with it" to most people much of the time. There were times when I would tell my doctor (also his primary doctor) some of the ways dad was declining and I sometimes felt as though the doctor might think I was making it up in some twisted geriatric Munchaussen syndrome way! My siblings often said he sounded fine on the phone. When I told them he could not dial a phone to save his life, they had to come see for themselves, which was actually helpful to me.

If having other people acknowledge/recognize the degree of the problem is important (and it often is) my suggestion is to tell those people to have a NON directed conversation with your mom for more than 30 minutes. Meaning, don't ask questions or direct the conversation in any way. That way, the patient is more likely to wander into nonsense.

Even our pastor, who visited my dad regularly, did not seem to see what we saw. At dad's funeral last weekend (he was almost 96) the pastor spke of our dad's love of walking, and how when he would go visit him at the assisted living, he often could not find him! My five siblings and I almost erupted with laughter right there in the service, knowing that while he was still walking this past summer, he wasn't staying fit by walking the grounds. He could never find his room!

Best of luck to you. If you can find a venting partner to laugh with when appropriate, I recommend it, as it sure beats crying. At least sometimes.

 
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