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Old 05-21-2012, 01:19 PM   #1
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"Problem Child"/FTD

Apparently my mother presents a real problem to nursing homes and rehabs; already we've been kicked out of one and rejected by a number of other nice ones, and now she's being called on the carpet at the not-so-nice rehab for her "behaviors." Not only does she not participate in therapy on the regular basis, but she yells, screams, insults, and repeats herself.

More and more I'm convinced that she suffered damage to the frontal lobes of her brain in that fall, resulting in (chronic bilateral subdural hematomas and thus) disinhibition and loss of impulse control, and there's NO CURE; they keep treating her like a "psych case" and trying to throw heavy-hitting antipsychotics at her. She's not "psychotic"; she just can't tolerate discomfort and says so... Often... Loudly... And rudely...

It's really very hurtful when staff praises her quiet little roommate for being so "good" and shoots my mother dirty looks for raising a ruckus; hello, she can't help it. She has BRAIN DAMAGE. Can I get an "amen"?

Never has she had an MRI/PET/SPECT or anything but non-contrast CTs (most of which have been inconclusive due to "motion infarct," since she can't sit still when agitated). It seems as if the whole world is geared toward AD and no one -- not even professionals -- can comprehend the FT dementias, which manifest so differently and really more disasterously.

At any rate, rehab keeps hinting that her days are numbered, and that's just fine with me. So not fair to label my formerly sweet, docile mom a "problem child." Again... Is there anyone else out there dealing with an atypical dementia? Anyone? I see threads in archives about FTD, but...

Last edited by all4mom; 05-21-2012 at 01:28 PM.

 
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Old 05-22-2012, 03:54 AM   #2
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Re: "Problem Child"/FTD

I donno, All4. If my wife keeps progress the way she is going, she will get that way as your mother, sooner than later.

 
Old 05-22-2012, 07:03 AM   #3
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Re: "Problem Child"/FTD

I am sorry that you mom - and you - are going through this.

My aunt has vascular dementia and the best thing they ever did was find the right anti-psychotic for her.

She was becoming very unmanageable, yelling, screaming, hitting, punching, poking, throwing, trying to get up and run, stripping clothing off, etc. In addition to all this she was miserable, suicidal, had fearsom delusions and hallucinations and she could not get through a day without incident. At that time after feasible suicide threats she was moved to the geriatric psychiatric center because her behavior was very disruptive and scary to the other residents in addition to being taxing to the staff. She is only 90 pounds but they could not have such a disruptive resident.

I was disappointed but I completely understood why they had to move her for a while and try to come up with another solution. If someone acts up occasionally it is one thing, but if someone is a frequent problem, it is not fair to the other residents. They are not "labelling" her, it is not "her", it is the disease, but the facility has an obligation to all its residents as well.

At the geriatric pyschiatric center, they worked up a 'happy cocktail" for her consisting of two anti-depressants, one anti-psychotic and anti-anxiety medications as needed.

Her behavior has calmed down - she is not totally docile, but she is easier to calm down and less extreme, just a notch or two beyond normal behavior. (She will roll her eyes or make a gesture and get snappish or raise her voice a tad, but usually not hit, yell, punch, poke or throw.) She will still occasionally try to take her clothes off but can be easily persuaded to keep something lighter on. She is much more manageable.

But the more important feature is that she seems a lot better off herself. She has far fewer delusions and hallucinations and almost seems somewhat rational a lot of the time. She is able to kind of coast through normal activities and enjoy her days, her meals, her TV, some games... instead of every day being an absolute torture for her that she could only react to loudly and aggressively. It is like night and day.

What convinces me even more is that when there is another resident who acts up - even just yells and screams - my aunt finds it very upsetting - it can upset her for days. She thinks that people who act up should be forced to leave :-) So I don't think we need to feel bad for preventing her from becoming one of them.

Now, with your mother's situation, I do not have any idea whether the anti-psychotics would have a good effect.

But, I would not necessarily rule them out automatically just because they are anti-psychotics.

They are frequently used in dementia and often prove very helpful to help the person have a better time of it.

The only proviso I would make is that it is tried under the right circumstances - under the direction of a geriatic psychiatrist and with the proper support for the first few weeks to change the medication or adjust the doses as needed.

Good luck whatever you decide.

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Originally Posted by all4mom View Post
Apparently my mother presents a real problem to nursing homes and rehabs; already we've been kicked out of one and rejected by a number of other nice ones, and now she's being called on the carpet at the not-so-nice rehab for her "behaviors." Not only does she not participate in therapy on the regular basis, but she yells, screams, insults, and repeats herself.

More and more I'm convinced that she suffered damage to the frontal lobes of her brain in that fall, resulting in (chronic bilateral subdural hematomas and thus) disinhibition and loss of impulse control, and there's NO CURE; they keep treating her like a "psych case" and trying to throw heavy-hitting antipsychotics at her. She's not "psychotic"; she just can't tolerate discomfort and says so... Often... Loudly... And rudely...

It's really very hurtful when staff praises her quiet little roommate for being so "good" and shoots my mother dirty looks for raising a ruckus; hello, she can't help it. She has BRAIN DAMAGE. Can I get an "amen"?

Never has she had an MRI/PET/SPECT or anything but non-contrast CTs (most of which have been inconclusive due to "motion infarct," since she can't sit still when agitated). It seems as if the whole world is geared toward AD and no one -- not even professionals -- can comprehend the FT dementias, which manifest so differently and really more disasterously.

At any rate, rehab keeps hinting that her days are numbered, and that's just fine with me. So not fair to label my formerly sweet, docile mom a "problem child." Again... Is there anyone else out there dealing with an atypical dementia? Anyone? I see threads in archives about FTD, but...

 
Old 05-22-2012, 07:08 AM   #4
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Re: "Problem Child"/FTD

Also, maybe you just need to look further afield to find a place that specializes in dementia and is aware of her particular type of dementia.

We were just really lucky that my aunt's place was good but many rehabs are not really equipped to handle dementia in general or an atypical one.

Making sure she has a geriatric psychiatrist and a facility who is used to managing such cases might go a long way. You might be surprised that they might recommend the same or similar things but sometimes hearing it from a psychiatrist or an organization that specializes in dementia care can be reassuring.

Quote:
Originally Posted by all4mom View Post
Apparently my mother presents a real problem to nursing homes and rehabs; already we've been kicked out of one and rejected by a number of other nice ones, and now she's being called on the carpet at the not-so-nice rehab for her "behaviors." Not only does she not participate in therapy on the regular basis, but she yells, screams, insults, and repeats herself.

More and more I'm convinced that she suffered damage to the frontal lobes of her brain in that fall, resulting in (chronic bilateral subdural hematomas and thus) disinhibition and loss of impulse control, and there's NO CURE; they keep treating her like a "psych case" and trying to throw heavy-hitting antipsychotics at her. She's not "psychotic"; she just can't tolerate discomfort and says so... Often... Loudly... And rudely...

It's really very hurtful when staff praises her quiet little roommate for being so "good" and shoots my mother dirty looks for raising a ruckus; hello, she can't help it. She has BRAIN DAMAGE. Can I get an "amen"?

Never has she had an MRI/PET/SPECT or anything but non-contrast CTs (most of which have been inconclusive due to "motion infarct," since she can't sit still when agitated). It seems as if the whole world is geared toward AD and no one -- not even professionals -- can comprehend the FT dementias, which manifest so differently and really more disasterously.

At any rate, rehab keeps hinting that her days are numbered, and that's just fine with me. So not fair to label my formerly sweet, docile mom a "problem child." Again... Is there anyone else out there dealing with an atypical dementia? Anyone? I see threads in archives about FTD, but...

 
Old 05-22-2012, 10:20 AM   #5
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Re: "Problem Child"/FTD

I obviously wouldn't be opposed to a drug that would help her since, as I've stated before, we've tried at least a half dozen of them already! Many she simply cannot take because they're nephrotoxic, and she's at Stage 4 kidney disease; her best response to date was to the antidepressant Remeron but, again, it's damaging to her kidneys, so her nephrologist pulled her off it. From what I read about traumatic brain injury, particularly to the frontal lobes, no medication is really effective (esp. not those effective for AD) other than "sedatives" to keep her calm. I prefer to keep her calm environmentally. Hence, our absolute worst nightmare would be locking her into two weeks of geri-psych, particularly when there are only one or two more drugs we can safely try on her, and that can be done on an outpatient basis (or, for that matter, in her current rehab). All there is to do for a FTL dementia, according to the website I visited, is to keep them calm. Easier said some days than others, I agree. This is why it's so important, IMHO, to get an accurate diagnosis. Not all dementias all the same, and not all treatments "work."

 
Old 05-22-2012, 11:29 AM   #6
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Re: "Problem Child"/FTD

Hello. I am sorry I did not know that they had tried them already, I thought they were trying to use them and that you did not want them to.

I think you have posted on other threads and I did not realize it was the same poster.

If you know the ways to keep her calm environmentally then I agree your facility should try to implement them.

What reasons do they give you for not being willing or not being able to do so?

And the places that would not take her, what reasons did they give? Did they think they maybe they were not properly equipped or staffed to handle her situation? Or were they disputing how they thought her case should be handled?

Lastly another dumb question - I understand why you do not want her in a geriatric psych center, but absent that, are you able to get access to the neurologists / psychiatrists, etc. that would properly specialize in diagnosing and prescribing if not medication then a course of treatment and care?

I have noticed that sometimes facilities can do fine when the treatment plan comes down from on high but at loose ends if the problem is not one that is "up their alley".

 
Old 05-22-2012, 11:40 AM   #7
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Re: "Problem Child"/FTD

When she was being released -- prematurely, IMHO -- from the hospital and we were looking for "rehabs" (that seems to be the course of health-care today; from acute to subacute care rather than staying hospitalized long enough to be able to come directly home, as in the past), a number of the better, five-star facilities turned her down after reviewing her record and seeing delirium, dementia and, yes, even soft restraints... Apparently they're "allowed" to discriminate in this way? They "declined," specifically.

She was on Seroquel for a couple of years after the hematomas; it worked well until her condition progressed and it DIDN'T work well, even in increased dosages. We then switched to Remeron, which worked well but, as I say, is incompatible with her kidney failure. In the hospital (where she suffers from "ICU Psychosis," being blind among other things; rehab isn't much better than a hospital in terms of confusion and noise), she was given Haldol, Geodon (sp?), Zyprexa and, our old standby, Ativan (only the latter works). In rehab, she was tried on Dekapote and (again, although I TOLD them) Seroquel. She remains pretty much always agitated and crabby with Ativan now PRN.

My last card to play is the Trazadone, which I've read sometimes helps FTD; the fact that the antidepressant Remeron helped her AND that Trazadone is sedating make me hopeful that it might help. According to the FTD site, though, the only "treatment" is environmental; indeed, the difference in her mood and behavior is obvious re: interaction with one aide versus another and even with my brother as opposed to me; she is reactive.

She wants what she wants when she wants it, and the same applies to what she DOESN'T want, lol; with her disinhibition, impulsivity, and irascibility, about all one can do is comply as much as possible and not overwhelm her with excess stimulation. If she were TRULY a two-year-old, of course we wouldn't indulge and spoil her, but would teach her patience and self-control. In this case, however, that cannot be learned.

She STILL calls for me all night, every night; to put her in a geri-psych would be like sending a little toddler to solitary confinement in a prison camp... At least that's how it would feel to her AND to me... We do have a neurologist, if I could only get her there, but I would dearly love to have her evaluated at the nearby medical center to nail down the precise diagnosis, as it's certainly not typical AD, in my opinion; I'm very curious. As for the Trazadone, her own local GP is very kindly and understanding and happy to try anything I've suggested in the past; I'm sure he wouldn't mind prescribing this for her...

Last edited by all4mom; 05-22-2012 at 11:45 AM.

 
Old 05-22-2012, 11:54 AM   #8
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Re: "Problem Child"/FTD

Well it sounds like you are certainly following all the logical courses of action.

I know the staff always is panning Ativan but there are time even with my aunt that ONLY Ativan will calm her down.

And yes, they are allowed to determine if a resident is not suitable by saying that they cannot provide the appropriate care. The "fancier" places near us are notorious for this especially with regard to frequesnt use of soft restraints. It is like best doctor's lists - some doctors won't take tough cases because it will put them at risk of falling off the list. Disgusting but true.

Why won't the neurologist (or an associate he designates or even a resident or student he can send to be his eyes and ears and write up her case for his evaluation) come to her?

Could it be that getting a proper diagnosis will not really be possible or feasible at this point? If she cannot feasibly get to them or they to her...

My aunt had hospital psychosis too so I can see why that is not the place for your Mom. Until that calmed down no evaluation was possible at all. And yes she was miserable for a few weeks in ger-psych but we felt it was worth it; if you don't think it is worth it then what is the point. For her it might be worth a hospital setting if the neurologist could see her and possibly flesh out the diagnosis.

If her GP will prescribe for you... and you have an idea what you would like to try... might not be a bad idea.

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Originally Posted by all4mom View Post
When she was being released -- prematurely, IMHO -- from the hospital and we were looking for "rehabs" (that seems to be the course of health-care today; from acute to subacute care rather than staying hospitalized long enough to be able to come directly home, as in the past), a number of the better, five-star facilities turned her down after reviewing her record and seeing delirium, dementia and, yes, even soft restraints... Apparently they're "allowed" to discriminate in this way? They "declined," specifically.

She was on Seroquel for a couple of years after the hematomas; it worked well until her condition progressed and it DIDN'T work well, even in increased dosages. We then switched to Remeron, which worked well but, as I say, is incompatible with her kidney failure. In the hospital (where she suffers from "ICU Psychosis," being blind among other things; rehab isn't much better than a hospital in terms of confusion and noise), she was given Haldol, Geodon (sp?), Zyprexa and, our old standby, Ativan (only the latter works). In rehab, she was tried on Dekapote and (again, although I TOLD them) Seroquel. She remains pretty much always agitated and crabby with Ativan now PRN.

My last card to play is the Trazadone, which I've read sometimes helps FTD; the fact that the antidepressant Remeron helped her AND that Trazadone is sedating make me hopeful that it might help. According to the FTD site, though, the only "treatment" is environmental; indeed, the difference in her mood and behavior is obvious re: interaction with one aide versus another and even with my brother as opposed to me; she is reactive.

She wants what she wants when she wants it, and the same applies to what she DOESN'T want, lol; with her disinhibition, impulsivity, and irascibility, about all one can do is comply as much as possible and not overwhelm her with excess stimulation.

She STILL calls for me all night, every night; to put her in a geri-psych would be like sending a little toddler to solitary confinement in a prison camp... At least that's how it would feel to her AND to me... We do have a neurologist, if I could only get her there, but I would dearly love to have her evaluated at the nearby medical center to nail down the precise diagnosis, as it's certainly not typical AD, in my opinion; I'm very curious. As for the Trazadone, her own local GP is very kindly and understanding and happy to try anything I've suggested in the past; I'm sure he wouldn't mind prescribing this for her...

 
Old 05-22-2012, 11:59 AM   #9
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Re: "Problem Child"/FTD

"And yes she was miserable for a few weeks in ger-psych but we felt it was worth it; if you don't think it is worth it then what is the point." That's the thing; if she were 73 and this impaired, looking at possibly another 20 years of life, I would certainly consider geri-psych and possibly even, at some point, placement; however, at 93, I don't know how many days or weeks she has left with her many co-morbidities. Do I want her to be lost, lonely, and afraid all that time? No. However, a good dose of ATIVAN so she could get an MRI, SPECT, or PET and a firm diagnosis? I would definitely say "yes" to that...

 
Old 05-22-2012, 12:21 PM   #10
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Re: "Problem Child"/FTD

I am afraid it may not even come to the point to get her diagnosed using MRI and etc. Sure I hope some med. can help her to get diagnosed. At this point, like you said, comfort care at home may be the best.
I know it is hard. Long time ago, people had dementia without diagnosis at all. My FIL never believed you can diagnose it until the death. That is why he does not believe that he has AD.

Lots of people still cope with the elders without the dementia diagnosed. It is not as uncommon as you think. These families don't advertise this, that is all. To them, it is old age and dementia. Just need caregivers...

Hugs,
Nina

 
Old 05-22-2012, 01:23 PM   #11
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Re: "Problem Child"/FTD

I agree with you completely.

It is unfortunate that getting her to the point/place of a proper diagnosis is so hard... you have my support for whatever it is worth!


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"And yes she was miserable for a few weeks in ger-psych but we felt it was worth it; if you don't think it is worth it then what is the point." That's the thing; if she were 73 and this impaired, looking at possibly another 20 years of life, I would certainly consider geri-psych and possibly even, at some point, placement; however, at 93, I don't know how many days or weeks she has left with her many co-morbidities. Do I want her to be lost, lonely, and afraid all that time? No. However, a good dose of ATIVAN so she could get an MRI, SPECT, or PET and a firm diagnosis? I would definitely say "yes" to that...

 
Old 05-22-2012, 01:27 PM   #12
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Re: "Problem Child"/FTD

I have followed your post from the beginning All and know you are doing all that you can, understand your Mom, and just trying to do the best with what is given to you in the moment. Foremost you are educating yourself and researching every aspect of your Mom's situation. Kudos to you

I don't think Mom needs a psych unit. My Mom did being in mid stage of Alzheimer's with no other health problems. We had tried and failed with one medication after another.... and I knew Mom had many years yet to life. We gather information from others but have to look at our specific situation to know what to do because each is different. I also know that your Mom's condition is not the same as my Mom's. They are very different and what works for one doesn't work for the other. Therefore we have made different decisions along the way. We have to gather information along the ways, throw out what doesn't work for us, and use what might work.... and I respect that... actually I admire that

You are doing an amazing job of managing your Mom's condition and advocating for her. I know you will keep it up. I do hope the Trazadon will help her and having her back home will go even further. I am a huge fan of environmental control if possible... it is the best way

Love, deb

 
Old 05-23-2012, 05:16 AM   #13
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Re: "Problem Child"/FTD

Just another story that might help. Yes, as already noted, facilities are able to decline patients. Patients who may need restraints at times and behavior problems are the hardest to place. NHs have strict guidelines regarding restraints, and it's always a worry to them. A facility will also be concerned with protecting their other patients and whether they can manage the patient with existing staff. A patient with behavioral issues can upset an entire ward. When one of the patients on DH's ward starts yelling, for example, the others will start to fidget, may start arguing, others may start to yell too, etc. They don't always know why someone is yelling and may not understand the words, but the patients clearly pick up on stress.

When DH had reached the point of needing NH care because his day care center said his behaviors had become too disruptive to their other clients, he was admitted to a hospital (to expedite nursing home admission, but that's another issue). The nursing home social worker worked with us to find a placement that would accept him. The hospital nurses had flagged on his hospital file that he was a behavior problem. His day care center records were also requested for the applications, since the NHs try to get a complete record of a patient's medical condition before admission. DH had tried to leave the hospital and wouldn't sleep at all, ultimately falling asleep on his feet. It was ultimately necessary to have a patient care person sit with him during his entire admission. The fact that he was a behavior problem as flagged by the hospital and day care records became part of our issues in finding him a placement. The facilities have their choice of patients from hospitals all over the area, and selecting one that is going to be hard to handle isn't high on their priorities.

We ultimately did get a room for him in a facility that specializes in dementia care (it helped that he was admitted as full-pay). They only accepted him into their "behavior ward" though. Within a few months, they sent him to a psych hospital for an involuntary commit because his behaviors were deemed to be threatening to himself or to other patients. They were concerned that he might push or otherwise injure another patient. I only got the call after the ambulance was already removing him from the facility - this was not something that the facility needed my permission to do. I was totally stressed out. I had to go through a hearing at the psych hospital to determine his status, and I was afraid that the NH wouldn't accept him back. If they weren't satisfied that he was no longer a danger to other patients, they wouldn't have to take him back. (Danger doesn't mean seriously hurting or killing someone, by the way. It could just mean pushing, slapping etc.) By that point, we had filed a Medicaid application. The number of facilities that would accept a Medicaid patient with behavior problems was practically nonexistent, and clearly the facilities that would take him were the places that we didn't want him to go. I was panicked that the original NH wouldn't take him back within the "bed hold" period.

The psych hospital turned out to be a blessing. Not only was the psychiarist absolutely wonderful, but he was able to prescribe medicines that calmed DH down and made his behaviors more "normal." The psych ward was pretty empty, had lots of staff for a few patients, and was relatively quiet, so DH seemed to be content there too. Ultimately our NH did take DH back within the bed hold period. (I did have to explain to the psych hospital that our medical insurance for psych care was limited.)

One of the aides told me that it's not unusual to go through this process since the hospital has more expertise than their NH doctors in figuring out how to address the behavioral problems.

I do think that the right meds go a long way to adjusting patient's panic or unhappiness. One of my jobs as a caregiver is to try to keep DH from being emotionally upset and unhappy, as part of an effort to give him the best quality of life possible for his remaining time. If meds can help with that, great. Likewise, DH got a better quality of life being in a skilled faciliity with 24-7 care when placement became necessary. We just try to do our best, and caregiving doesn't end with placement.

Last edited by Beginning; 05-23-2012 at 05:19 AM.

 
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Old 05-23-2012, 09:10 AM   #14
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Re: "Problem Child"/FTD

Well, your FIL is actually quite right that AD cannot be definitively diagnosed until necropsy; I realize we now *think* we can diagnose it with 99.99% accuracy (and everyone simply calls EVERY form of dementia "Alzheimer's"), but that's not true and to do so is inaccurate. It also does a grave disservice to those, like my mother, who may have FTD, Lewy-Bodies, traumatic brain injury, vascular, etc. in which the AD drugs are either totally ineffective or even harmful/counterproductive. I understand that it's like people calling every facial tissue a KLEENEX or every photocopy a XEROX, but not every dementia is ALZHEIMER'S; wish we could educate the public on this point. Also, there really is no medication that works or else there would be no one in facilities because they have dementia; they'd be out walking around like diabetics controlled on insulin...

To update, she seems a bit calmer now, if more depressed (she exhibits what I call "Eeyore Syndrome"; sort of a woe-is-me narrative), and I really would like to do a trial on the trazadone, but I guess we'll keep that in reserve unless/until needed; the larger dose (than she was ever on previously) of Seroquel seems to be helping?

I'm just the curious type; as grisly as it would be, I'd almost have to have an autopsy if we can't get the specific tests needed to "suggest" frontal lobe damage during her life...

"It is unfortunate that getting her to the point/place of a proper diagnosis is so hard... you have my support for whatever it is worth!" It's especially maddening since we're just 30 minutes away from a major medical center that apparently has specialists in the FTL dementias -- at least according to their association's website -- and Mom was an inpatient there just a month or two ago! I even requested a neuropsych consult and was told by her attending (in a team of hospitalists): "Why? They'll just tell you she has dementia and it will get worse..."

Maybe it just feels less threatening if you can put a name to it; otherwise, keeping the symptoms under control is what matters.

Last edited by all4mom; 05-23-2012 at 09:18 AM.

 
Old 05-23-2012, 11:49 AM   #15
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Re: "Problem Child"/FTD

You know, the human urge to impose order upon chaos is primordial. Yes, something does feel less threatening to us if we can put a name, at least a meagre sembalance of ordre, on it. At least if we can put the name we can reach a level of assurance that we have gotten the right treatment/medication. We hate the idea that we got them treatment for X and really they had Y, and had they gotten treatment for Y they might at least have felt a little better.

I have a strong urge to kick those hospitalists in the backside on your mom's behalf. Don't those who marginalize the elderly realize "where she is now, they will someday be" is not just personal, but global and pan-human. As scientists and practioners they have a moral obligation.

Who knows what could be learned and what benefits realized by greater understanding of diseases and trauma of the brain.

It can be positively maddening when the people who are supposed to care are so offhand!

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Originally Posted by all4mom View Post
Well, your FIL is actually quite right that AD cannot be definitively diagnosed until necropsy; I realize we now *think* we can diagnose it with 99.99% accuracy (and everyone simply calls EVERY form of dementia "Alzheimer's"), but that's not true and to do so is inaccurate. It also does a grave disservice to those, like my mother, who may have FTD, Lewy-Bodies, traumatic brain injury, vascular, etc. in which the AD drugs are either totally ineffective or even harmful/counterproductive. I understand that it's like people calling every facial tissue a KLEENEX or every photocopy a XEROX, but not every dementia is ALZHEIMER'S; wish we could educate the public on this point. Also, there really is no medication that works or else there would be no one in facilities because they have dementia; they'd be out walking around like diabetics controlled on insulin...

To update, she seems a bit calmer now, if more depressed (she exhibits what I call "Eeyore Syndrome"; sort of a woe-is-me narrative), and I really would like to do a trial on the trazadone, but I guess we'll keep that in reserve unless/until needed; the larger dose (than she was ever on previously) of Seroquel seems to be helping?

I'm just the curious type; as grisly as it would be, I'd almost have to have an autopsy if we can't get the specific tests needed to "suggest" frontal lobe damage during her life...

"It is unfortunate that getting her to the point/place of a proper diagnosis is so hard... you have my support for whatever it is worth!" It's especially maddening since we're just 30 minutes away from a major medical center that apparently has specialists in the FTL dementias -- at least according to their association's website -- and Mom was an inpatient there just a month or two ago! I even requested a neuropsych consult and was told by her attending (in a team of hospitalists): "Why? They'll just tell you she has dementia and it will get worse..."

Maybe it just feels less threatening if you can put a name to it; otherwise, keeping the symptoms under control is what matters.

 
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