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ssb60
Posted: Tuesday, March 13, 2018 7:57 PM
Joined: 11/13/2016
Posts: 14


My brother, 61, retired firefighter, 9/11 first responder at Pentagon, diagnosed PTSD, long time bipolar diagnosis, paranoid episodes, dementia, now in assisted living. Went thru some med changes and did really well for a couple of months. Had lost a lot of cognitive abilities before med changes but with reduction of lithium got some of cognitive back. Unfortunately, depression and delusions came back. He's on lithium, lamictal, risperadone, trazadone and those are just psych meds. He's on so many different meds, told them no for dementia meds. (Dementia meds upset his stomach on top of other meds that upset his stomach.)

For past month or so going thru these weird "zombie" phases. Wont make eye contact, no emotion, very confused, very limited speaking ability, slow reaction and movements. Zombie phase happens several times a day and last about an hour. When he's ok, he has acceptable symptoms of dementia. He's definitely gone downhill. Frantic trying to figure out what is somewhat "normal" for dementia??? Looking back, I'm guessing he had it for awhile. Things were probably chronic for at least 5 years, he hid it well. Does anyone have any insight??? 


Horse Lover
Posted: Wednesday, March 14, 2018 3:07 AM
Joined: 11/4/2017
Posts: 122


Alzheimers runs in my family and I currently have EOAD.  My sister is in a nursing home and in the final stage.  Unfortunately, what you described is exactly what is to be expected.  Patients lose their personality, ability to speak, ability to do many things over time.  Unfortunately, they often eventually forget how to swallow.  I'm sorry that you are having to go through this but it sounds like normal progression for Alzheimer's disease.
llee08032
Posted: Wednesday, March 14, 2018 6:59 AM
Joined: 5/20/2014
Posts: 4348


I can't imagine how frustrating this must be for you and I wish I could be more helpful. However, there is a cluster of complex factors at play here including the med's, mental illness and dementia which makes it difficult to pinpoint what's what and separate the symptoms? Some symptoms of mental illness can overlap with symptoms of dementia. Then you have the exacerbating impact of the medications on top of the dementia. Not sure if there is a clear cut answer to be found... also not sure what you mean by "acceptable symptoms" of dementia? 

The "zombie phase" as you describe could be the effects of med's or that you're brother's dementia is progressing. Is he agitated and restless during these periods of time? Did you notice any decrease in the non-responsive behavior when med's were tapered? What type of dementia?


ssb60
Posted: Wednesday, March 14, 2018 10:36 AM
Joined: 11/13/2016
Posts: 14


No official diagnosis. Psychologist, neurologist, cognitive therapist did couple of word tests and called it dementia. Tried taking him to different MD’s and they do their little tests and tell us to come back in three months!!!??? Looking into getting him admitted to memory and Alzheimer’s clinic in Baltimore just so we can figure out what is going on. He’s gone dramatically downhill in past month. Toilet issues, fixations, etc. Extremes seemed to have happened really quick. Just when I’ve adjusted to one change, I’m blindsided by something new. Devastating. Thank you for your reply and info.

Memory loss, confusion, loss of cognitive abilities were standard symptoms. He's way past that now. Looked at dementia stages 1-7, he's between 5-6. It seems lately, every day he's a little worse.


Unforgiven
Posted: Wednesday, March 14, 2018 11:21 AM
Joined: 1/28/2013
Posts: 2495


Dementia is a symptom of many underlying conditions, including Alzheimers.  A diagnosis of the cause is difficult sometimes, but it can give physicians and family a roadmap of how the dementia can be expected to progress and how best to treat the symptoms.

Now, I'm not a doctor, and I don't even play one on TV, but a former firefighter may have been exposed to all manner of toxic chemicals in the line of duty.  It is a life factor to be investigated and ruled out.

Such a tragedy to strike one of our finest public servants.  Life can sure be unfair.  I send you both hope for the best.


Iris L.
Posted: Wednesday, March 14, 2018 12:45 PM
Joined: 12/15/2011
Posts: 15435


When I was in medical school I had a patient with advanced dementia who responded to vitamin B12 injections.  This means it is very important to rule out medical causes that mimic Alzheimer's Disease.  Also, current medications that he is on could be causing the changes that you see.  Even medications that are prescribed to manage one symptom can cause unwanted side effects, alone or in combination with other medications.  At the same time, what you see could be disease progression.  Consultation with a knowledgeable dementia specialist is indicated.


Iris L.


jfkoc
Posted: Wednesday, March 14, 2018 12:57 PM
Joined: 12/4/2011
Posts: 15328


So glad you found us here. We will share any ad all information and support we can.

Not diagnosed. I would start there and find the closest (and you may have to travel) dementia center. Make the appointment which will be months out.

In the meantime go to drugs.com and enter all meds he takes including OTC supplements. Everything. Print out each one including/especially the side effects.

Then go to the drug interaction function on the site.

Check to see if there is a DPOA, Living Will and get financial matters under control.

!. good DR

2. proper meds

3 legal financial matters ...if you need legal help get a certified Elder Care attorney.

Besides these forums utilize the #800 for alz.


BadMoonRising
Posted: Wednesday, March 14, 2018 4:35 PM
Joined: 4/22/2017
Posts: 228


ssb60,

It usually takes about 3 months to get an appointment at the JH Memory Clinic. This would be at Bayview, not the main campus. If you haven't yet scheduled an appointment at Hopkins, you may want to specifically request an appt with one of the docs that are Board Certified in "Psychiatry & Neurology". Here is a link to one of them.

 https://www.hopkinsmedicine.org/profiles/results/directory/profile/0018544/paul-rosenberg

Given your brother's mental health issues and what appears to be an inadequate work up thus far, I think Dr. Rosenberg is probably the guy you're looking for. But as suggested above, there are also others on staff who are Board certified in "psychiatry & neurology" and would be equally qualified to evaluate your brother.


jfkoc
Posted: Wednesday, March 14, 2018 5:13 PM
Joined: 12/4/2011
Posts: 15328


Wonderful information!
ssb60
Posted: Wednesday, March 14, 2018 6:40 PM
Joined: 11/13/2016
Posts: 14


Thank you so much for your reply and info.
ssb60
Posted: Wednesday, March 14, 2018 7:17 PM
Joined: 11/13/2016
Posts: 14


How kind of you! He did a couple of stays in mental care. They did a lot of testing and eliminated a lot. A few said it wasn’t dementia, more psychological and others said dementia??? Personally, I think because of all the trauma he witnessed in firefighting (hardest being teen suicide), search and rescue (plane crash recovery where largest human remain was size of deck of cards), volunteer with two rescue squads (mountain pass car fatalities), they had a cumulative effect and broke his brain. My unprofessional diagnosis. Again, thank you so much for your care and kindness. 

He will be going to JH Memory and Alzheimer’s Center for inpatient care. From there most likely memory care facility. Latest development. 


ssb60
Posted: Wednesday, March 14, 2018 11:28 PM
Joined: 11/13/2016
Posts: 14


Awhile ago, read about B shots. Approached GP about it and she said his B levels were fine. Have found with his care, a lot of indifference!!???? I've wanted to scream that there is a person attached to the symptoms. Have been dealing with this for 2 years and it's always been an uphill battle. Thank you for your info.
ssb60
Posted: Thursday, March 15, 2018 12:02 AM
Joined: 11/13/2016
Posts: 14


Thank you so much. Hoping that he will be admitted into JH Bayview in next couple of days. Previously have made appts with them and wait was 4 mos. Have my fingers crossed.
Iris L.
Posted: Thursday, March 15, 2018 12:11 AM
Joined: 12/15/2011
Posts: 15435


Yes, there is a lot of indifference and it is a uphill battle.  I just thought of something.  You might try to contact a firefighter's organization, something like Wounded Warriors for soldiers.  They might have advice regarding dealing with the traumatic events or referral to an organization or medical center that specializes in that.


Iris L.


alz+
Posted: Thursday, March 15, 2018 5:56 AM
Joined: 9/12/2013
Posts: 3218


I was told I was bi-polar when in fact I had early stages of Alzheimer's. I took some of the drugs you listed, all of them made me crazy, together they were a nightmare, still I was told I needed to comply and tried to cooperate.

The ALZ drugs were too hard on me in all respects.

A person spends his life helping others in distress, of course he is wounded. Having a feeling seems to be  medicated away now. I am so glad you are paying attention to how he is treated and I  believe your frustration is important to maybe giving him a chance at life.

I would be shocked if someone taking all those drugs was not losing their mental abilities, but I am not a medical person and am biased because they left me with a tongue that constantly moves and caused my behavior to worsen which impacted my relationship with my children and family.

I appreciate you standing up for your brother and asking questions.


ssb60
Posted: Thursday, March 15, 2018 8:04 AM
Joined: 11/13/2016
Posts: 14


There’s a facility in Prince George’s County that is operated by firefighters international union specifically for first responders suffering from addiction, PTSD. Was in the process of getting him admitted when at 11th hour declined because of dementia. They felt he would be incapable of participating in group therapy sessions. Was a real blow. Every time I’ve reached out to his unit, EAP, Union he’s been ignored or refused. There’s a lot of BS lip service about honoring and supporting first responders. Has NOT been my experience for my brother. 

Initially, had a lot of worry about financial end of care. He dedicated his whole life to service to others and I believe he deserves the best possible care. His disability check doesn’t cover AL cost. Wonderful facility with lots of amenities and activities. I felt he deserved at least that. Decided to get him in and worry about money later. I was getting so worried was going to contact governor. Things are cautiously improving. He has a modest amount of retirement investment and we just sold his house. He’ll be 62 next year and I’m going to put in for early social security for him. Tried to get him disability so he would get full amount, but declined. Have no idea about cost of Memory care, but guessing not cheap. Real nice... hoping he doesn’t outlive his money. 


BadMoonRising
Posted: Thursday, March 15, 2018 9:10 AM
Joined: 4/22/2017
Posts: 228


ssb60,

You may already know this but here goes. Filing early for Soc Sec retirement benefits is usually a bad idea as the reduction in benefits is permanent. In your brother's case, his benefit will be reduced by 27.5% for the remainder of his life. If he is awarded disability there will be no reduction in benefits. He would receive as much today as he would when he reaches full retirement age.

 https://www.ssa.gov/planners/retire/agereduction.html

If it is not too late it would be best to appeal the denial, otherwise file a new application. Is he receiving health insurance through the county?


llee08032
Posted: Thursday, March 15, 2018 9:50 AM
Joined: 5/20/2014
Posts: 4348


I agree to appeal the denial or restart new application for disability benefit. Being dx with PTSD and exposure to trauma raises risk level for dementia. Benefits can be fast tracked with dementia dx. Your brother is lucky to have a sister like you fighting for his rights. Greatly admire all you're doing for him!
BadMoonRising
Posted: Thursday, March 15, 2018 5:55 PM
Joined: 4/22/2017
Posts: 228


ssb60,

I see where I missed the part of your prior post that suggests you understand the significant difference between the value of disability benefits and reduced retirement benefits. Sorry.

If your brother's denial has nothing to do with his disability, read no further.

Assuming he was found not disabled, and the 60 (+5 mailing) days for appeal has passed, the following information would provide another avenue for the appeal to go forward.

Social Security has a special rule (Acquiescence Ruling) for the 4th Circuit (Maryland, etc.) that would permit your brother to request a reopening of the final decision (his denial) if he can show he was not mentally competent to file an appeal at the time he received the denial. Note: Your brother does not need to be legally incompetent to meet that standard; he just needs to show that he was unable to file a timely appeal because of his mental illness (or dementia).

https://www.ssa.gov/OP_Home/rulings/ar/04/AR90-04-ar-04.html

If you don't want to deal with this, you could hand his disability claim over to a local S.S. attorney and still apply for his retirement benefits when he reaches 62. If he wins the disability claim, he would draw that instead of the reduced retirement benefit.

If your brother is as bad off as it appears in this thread, he should not have difficulty reopening his claim.

**I promise I will not write another word about your brother's disability claim.**

 

 


Iris L.
Posted: Thursday, March 15, 2018 6:26 PM
Joined: 12/15/2011
Posts: 15435


The majority of SSDI claims are denied the first go-around.  The government seems to want appeals.

  I agree, go for SSDI.  Does he have long term disability from the fire department, separate from SSDI?  I had both LTD and SSDI.  His normal retirement age would be 66 or 67 and he would get a higher pension than he could get at age 62.

I don't know on what basis he was determined to have dementia.  Often it is difficult to distinguish between brain injury due to various causes and dementia or even some psychiatric disease.  Many conditions mimic dementia and are disabling but not progressive or terminal.  Poly-pharmacy (too many medications with interactions) is a major cause of dementia mimicry.  I am not saying this is so in your brother's case; only a knowledgeable practitioner would be able to determine this, after careful evaluation of the patient's responses to various dosages.


My psychologist told me that people with dementia are not eligible for services.  So if you want him to get services, you might focus on the psychiatric or other diagnoses.  Is he able to cooperate?  Does he have anosognosia?  This is a characteristic of the dementias and some other neurological diseases/conditions and brain injury in which the patient is unaware of being impaired.  Does he say he is fine?  If so, this is anosognosia.  This points toward dementia, but does not exclude other etiologies.

Dementia is a rule-out diagnosis.  Meaning, that any potentially treatable and reversible causes are sought out first.  If, after sufficient trial, treatment shows no improvement, then the diagnosis can be determined to be dementia.  The current term is major neurocognitive disorder.  


Iris L.


eaglemom
Posted: Thursday, March 15, 2018 10:45 PM
Joined: 3/7/2012
Posts: 2174


This is a great post. Encouraging and helpful, thanks everyone. This is why we have the message boards.

eagle


dayn2nite2
Posted: Friday, March 16, 2018 7:36 AM
Joined: 6/20/2016
Posts: 1587


Did he ever apply for and receive compensation due him from the September 11 attack?  Info here:

 https://www.justice.gov/opa/pr/compensation-remains-available-9-11-responders-and-survivors-affected-their-exposure-fund


ssb60
Posted: Friday, March 16, 2018 8:55 AM
Joined: 11/13/2016
Posts: 14


Yes, gets a pretty good disability check from Arlington county. Not a lot of money, but pays bulk of assisted living. Honestly, the way he's going, I'll be surprised if he lasts a year. Really don't think he'll see 66. He's gone downhill so quickly. I've never in my life cried so much or have ever gone thru so much anguish. It's worse than watching someone die. Will definitely try and file for full social security again.

Guess this is "preaching to the choir" but I get so worn out and overwhelmed. Oh well. Makes me feel better to whine a little!!

Thank you so much for your advice.


ssb60
Posted: Friday, March 16, 2018 9:05 AM
Joined: 11/13/2016
Posts: 14


No. Never filed or received anything other than disability due to PTSD. Will definitely check this out. Thank you so much
ssb60
Posted: Friday, March 16, 2018 3:45 PM
Joined: 11/13/2016
Posts: 14


Never conclusively diagnosed as dementia. "That's what it looks like, so that must be it." He was admitted to Psychiatry facility 2 times. They did a bunch of tests and found out what it wasn't. His 2nd admission he started out in psychiatric unit and then was moved to geriatric. He's had MRI's, brain scans. They just showed normal aging of brain. He also had a PET, but don't know those results.

Get this, I'm trying to get him admitted to Johns Hopkins Memory and Alzheimer's Center. Almost ready for transport and just find out they wont take him because he doesn't have medicare!!! He has pretty good insurance but not medicare. They then tell me they only deal with dementia care and that he should go to psychiatric facility. Call Sheppard Pratt, where he was admitted 2 times. They said he should go to ER, where they will run a bunch of tests and then be referred to SP. 

I'm about to lose my mind. I can't get anyone to care. It's all about passing the buck!! WTH????


Iris L.
Posted: Friday, March 16, 2018 3:54 PM
Joined: 12/15/2011
Posts: 15435


Ssb, you are on a board that is mostly visited by patients with cognitive impairment and dementia.  You might also visit the Caregiver's Board.  They might give you a different perspective to approach your caregiving, along with advice on how to go about your appeal for SSDI.


Iris L.


jfkoc
Posted: Friday, March 16, 2018 5:18 PM
Joined: 12/4/2011
Posts: 15328


You will get additional help from caregivers board so please do post there as well.
BadMoonRising
Posted: Friday, March 16, 2018 5:59 PM
Joined: 4/22/2017
Posts: 228


I wish I had seen OPs post a few hours earlier. This is definitely a cluster f*!k.  I'm think there's a lot of miscommunication going on between OP and/or her brother and the staff at both facilities.

Here are SPs guidelines:

https://www.sheppardpratt.org/patient-care-and-services/admissions/admissions-process/

ssb60,

If you see this post PLEASE accept my connection request. I would like to provide you with more direct assistance but I don't want to do this on a public forum.

BMR


ssb60
Posted: Tuesday, March 20, 2018 4:32 PM
Joined: 11/13/2016
Posts: 14


Wow!!! Thank you so much for all the info. In the process of moving him to a new facility, so have been busy. New place works closely with a very thorough psychiatrist so I'm hoping the meds and mental state improve. Have my fingers crossed.

I'm thinking about hiring an eldercare lawyer to approach social security. Tho, your post looks interesting. Will look into that also. I don't want extra, I want my brother to get what is owed to him! Believe me, there's no doubt that he is now disabled. Thanks again for the info.


ssb60
Posted: Tuesday, March 20, 2018 4:33 PM
Joined: 11/13/2016
Posts: 14


I'm a major newbie. Don't know if I accepted your request or not???? Hope I did!!
BadMoonRising
Posted: Tuesday, March 20, 2018 6:46 PM
Joined: 4/22/2017
Posts: 228


ssb60,

 I'm very happy to see that, so far, you and your brother are doing o.k. TBH, I was a bit worried as you seemed super anxious at the time. 

 As far as the connection invite, mine still shows that your invite is out there. If you're interested in connecting,

Look at the above connections tab (there should be a number telling you how many open invites you have)

 1) Click on the connections tab

2) Click on Invitations

 3) Click on green to accept (or orange to ignore).

I think that's all there is to it. Please don't feel you need to accept any invitation, including mine, in order to continue seeking help on this board.


 
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