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New Younger Onset AD brochure
Iris L.
Posted: Thursday, March 22, 2012 1:14 AM
Joined: 12/15/2011
Posts: 16234


I had not seen this PDF Younger Onset AD brochure before.  It looks like it was recently revised in 2011.  It has good information in it.  http://www.alz.org/documents/dsw/Early_On_Set_Alzheimers.pdf  

 

I like brief tracts because I'm negatively affected by information overload from other written material.

 

 Iris L. 


Lisa428
Posted: Friday, March 23, 2012 2:25 PM
Joined: 12/5/2011
Posts: 795


Thanks Iris,

 

It is much better than the old one!

 

Thanks for sharing.

 

Lisa


frustrated047
Posted: Sunday, March 25, 2012 2:05 PM
Joined: 12/18/2011
Posts: 36


Iris,  

 

I agree with Lisa and thank-you for posting!  I will say that for the younger-onset ones that still have children they are trying to raise, it really is hard to reduce the amount of stress.   


Iris L.
Posted: Monday, March 26, 2012 2:35 AM
Joined: 12/15/2011
Posts: 16234


Living with an EOAD or other Younger onset dementia diagnosis with children at home is probably the ultimate challenge.  But as a health-challenged community, we have to develop ways to approach and conquer this challenge.  The cancer and HIV/AIDS communities have done this 

 

Tracy (younghope) started a camp for young people with a parent diagnosed with EOAD.  Camps and support groups for the children and teens, and a website for them, will go a long way toward helping them.  But first we patients and caregivers have to ask for these things.  We have to let the public know there is a need for these resources. 

 

Iris L. 


TommyT
Posted: Monday, March 26, 2012 5:19 PM
Joined: 3/23/2012
Posts: 17


Important hings to remember:
1-  people with EOAD are still people with active minds. Don't talk around us, alwayts include us in conversation.

2- Never treat a person with dementia like a criminal. The state just charged me and I spent almost two weeks in prison because of an out burst at homein. They upped my Seroquel  while there and released me to a nursing home pending a hearing a month away. My wife objected to no avail!


Myriam
Posted: Monday, March 26, 2012 6:49 PM
Joined: 12/6/2011
Posts: 3326


Tommy, my heart breaks for what you've gone through. =(( broken heart
TommyT
Posted: Monday, March 26, 2012 7:42 PM
Joined: 3/23/2012
Posts: 17


Myriam wrote:
Tommy, my heart breaks for what you've gone through. =(( broken heart 

As always in Alzheimer's related issuies the caregiver suffers the most. My wife didn't want any of this to happen. The state of Pennsylvannia brought the charges. It is out of our control. On top of it all, my son had to post $2500 bail to get me out of pison so I could be in this nursing home. The cost is nearly $5000 a month for this place!

Talk about the cost of Alzheimer's!!!


Iris L.
Posted: Monday, March 26, 2012 11:59 PM
Joined: 12/15/2011
Posts: 16234


What a catastrophe!  Do you have a lawyer?  What does the lawyer say about your case?  Can you get the charges dismissed?  Will your doctor be a witness for you? 

 

I hope this all gets resolved quickly. 

 

Iris L. 


TommyT
Posted: Tuesday, March 27, 2012 7:53 AM
Joined: 3/23/2012
Posts: 17


Iris L. wrote:

What a catastrophe!  Do you have a lawyer?  What does the lawyer say about your case?  Can you get the charges dismissed?  Will your doctor be a witness for you? 

Iris L. 


We really cant afford a real lawyer, not when the "home" is costing nearfly $5000 per month. I will use a public defender. We can't get the charges dropped since my wife didn't press them, that is the state of PA. We are fighting the state! I don't know if my doctors would be a wittness for free, I dont think so.
Iris L.
Posted: Tuesday, March 27, 2012 11:20 PM
Joined: 12/15/2011
Posts: 16234


I'm not a lawyer.  But I wonder if there is a legal defense of being in an uncontrolled medical condition and not on the appropriate medication or dosage of medication.  The public defender should be able to tell you.   

 

Are you applying for Medicaid? 

 

Iris L. 


TommyT
Posted: Wednesday, March 28, 2012 6:10 AM
Joined: 3/23/2012
Posts: 17


Iris L. wrote:

I'm not a lawyer.  But I wonder if there is a legal defense of being in an uncontrolled medical condition and not on the appropriate medication or dosage of medication.  The public defender should be able to tell you.   

 

Are you applying for Medicaid? 

 

Iris L. 


 

I'm hoping for exactly the same defense, we'll see. The Public Defender is a good bet but the local Alzheimer's Association has offered to support me also. I'm pleased with that offer,lets see if it happens!

 

I'm currently on Medicare as part of my SSDI benefits.


Mimi S.
Posted: Wednesday, March 28, 2012 9:21 AM
Joined: 11/29/2011
Posts: 7035


Oh Tom,

I'm so sorry.


Oe thing I've advocated for ages is that Caregivers have a talk about what would happen to the patient  in such a case as you write about.


Going to prison is what none of want. 


So my advice is to speak to the authorities ahead of time and figure out what steps will be taken to ensure all involved are safe and treated appropriately.


Iris L.
Posted: Wednesday, March 28, 2012 11:32 AM
Joined: 12/15/2011
Posts: 16234


Tom, it came to me this morning what I was thinking about.  In California there is a Code 5150 which allows for the involuntary psychiatric hold of a person who is a danger to self or others because of a mental health disability.   

 

Your public defender can look for something like this in the Pennsylvania laws.  There are 72 hour holds, also 14 day holds and 30 day holds.  This avoids incarceration and all the trauma and mistreatment that involves.   

 

I found three good references that can give you more information.  They may be too much for you to read at this time, but you can get an idea of the procedures. 

 

http://en.wikipedia.org/wiki/5150_(Involuntary_psychiatric_hold)

http://www.lasuperiorcourt.org/mentalhealth/FacilityBasedHearings.htm 

http://www.sfdph.org/dph/files/CBHSdocs/5150Manual042010.pdf 

 

What happened to you should not have happened!  I'm glad your local Alzheimer's Association is also helping you. 

 

Mimi is right, the spouses and other caregivers members are advised to call 911 for paramedics and to request a psychiatric hold for medication management. 

 

Iris L. 


Iris L.
Posted: Wednesday, March 28, 2012 12:17 PM
Joined: 12/15/2011
Posts: 16234


I'm going to throw something out there, just for arguement's sake.  If this were my case, and I were a diagnosed Alzheimer's patient involved with the local Alzheimer's community, who had always been an unstanding contributing member of the community, I would not be adverse to letting the public know of my situation.   

 

I would call local newspapers, radio and television, community organizations dealing with seniors and the mental health community, and my local congressperson.  I would let everyone know.  I would raise h-e-double hockey sticks.  I don't know how much this would help my case, but it might bring awareness and help avoid someone else being in this situation in the future. 

 

That's if this were my case.  Publicity might be too much for other patients and families and I can understand that and have no problem with that.  Everyone has to do what's best for themselves and their families. 

 

 

Iris L.   

 


TommyT
Posted: Wednesday, March 28, 2012 6:02 PM
Joined: 3/23/2012
Posts: 17


Iris L. wrote:

 Everyone has to do what's best for themselves and their families. 

 

 

I'm an open book but that would kill my wife!

Iris L.
Posted: Wednesday, March 28, 2012 7:13 PM
Joined: 12/15/2011
Posts: 16234


Enough said.  She has enough to deal with.   

 

Iris L. 


Mimi S.
Posted: Wednesday, March 28, 2012 7:36 PM
Joined: 11/29/2011
Posts: 7035


Iris,
Normally I agree with you, especially about publicity. Tom says no. And that's it.  And you agree. 
In this particular case, once the charges have been filed, the District Attorney of Tom's county is the only one with the power to drop the case. And since we don't know how all that publicity would affect that one individual, it's not worth chancing it.
Better to work behind the scenes. 
But Tom's case is a warning. It is good to find out beforehand what actions would be taken. Not every community has a geri-psych ward within that county. 
Do not call 911. Find the non-emergency # and call that one.

younghope1
Posted: Friday, March 30, 2012 7:33 AM
Joined: 12/5/2011
Posts: 127


Iris, thanks for mentioning the camp, it has grown to almost 30 teens at this moment for this year. Not even a drop in the bucket when there are over 250,000 children between the ages of 8 and 18 that are in a caregiving role to a loved one with dementia.

 

You see the sad thing is, the families do seek this kind of service, I have talked to so many families and read posts from families on here seeking some type of support system for their child. I have written to and talked to the National Office about putting the camp website on their site and their response is or was a couple of years ago, "it isn't needed at this time." So, I guess those 250,000 children mean NOTHING!!! They are forgetting, these are today's caregiver's, they are growing up in a dementia atmosphere and they need a respite and education from and about dementia just as bad if not worse than the adults do. The camp being advertised on theri website would reach so many families!

 

Sometimes, I wonder if National doesn't get its priorities mixed up and worry more about money than helping those in need.

 

For anyone here interested that has a young teen ages 12-18, Camp Building Bridges is a respite for them for 6 days at an awesome Christian based Campground in Oklahoma. Just Google, Camp Building Bridges and that will take you to the site. Feel free to contact me or Denyce Willis (Oklahoma Chapter) or Angel King (Southwest Missouri Chapter) if you have any needs or questions.

 

Tracy

Camp Building Bridges